View Full Version : Als MND panic- please help me!
I am in such a terrible place at the moment- I am trying not to cry as I write this as my toddler is next to me on the sofa 😪😪
I have a long history of sometimes crippling health anxiety, but for the last three years it has been a bit more under control but..... now it is back and I almost can't bare to keep going.
I am terrified I have ALS and my children are going to have to watch me die a hideous death. It all started when I tripped over a stump on Arun a few months ago. Since the. I have noticed weirded muscle twitching- my eyelids and frequently a muscle in my thumb.
However because I don't have any muscle weakness I have started thinking I have bulbar onset: I have started to find swalllowing hard, like with dry bread I have to swallow twice to get it down and two days ago I was drinking coffee and it went down the wrong way and I choked. And I am obsessed with the idea that my voice is slurred. My family says it is normal but I keep recording myself saying tongue twisters and listening to them again and again... it's awful. Now I think perhaps my voice is nasal - another symptom! 😱😱😱😱
And a few times when I breat in through my mouth a little speck of saliva goes down my windpipe and I cough- for some reason this causes me to feel really sure I have ALS.
I am SO scared. I can't bare this ..... Has anyone had similar fears????
First of all you shouldn't be listing symptoms on here. There are a number of people here who share your conviction that they have ALS and the last thing they need to read about is more symptoms. It is extremely unlikely you have ALS. I bet you have experienced all of those things before. I've choked on a drink numerous times. People do. The only thing that is new is that you went off and read up on ALS symptoms. So now you believe that you are having trouble swallowing and that belief will cause you to have problems swallowing. Swallowing is an automatic process like breathing. Once you try to take control of those processes you are going to experience problems.
Thank you for replying- sorry for listing symptoms and you are right : I did read about them first. BUT they are real (now) and terrifying. I am an experienced sufferer of health anxiety and I actually find it quite cathartic reading about symptoms on here, because- apart from helping me feel not alone - it also reminds me what anxiety can do!! But thank you, just reading your reply is helpful ��
How helpful is it really reading about symptoms on here? After all it's what brought you here stressing about having ALS in the first place. Reading about symptoms. So that makes no sense.
Regardless, the overwhelming majority of those here with a fear of ALS do not need to learn about symptoms that they haven't even considered yet.
The ALS rabbit hole is very deep and narrow. Hopefully you're not too deep in at this point. Please read THIS (http://www.nomorepanic.co.uk/showthread.php?t=196071).
Positive thoughts
Thank you fishmanpa! You are so right and I am heading fast down that hole. I'm trying to tell myself that what started all this was tripping over on a cross country run, and so for ages I was worried about spinal onset ALS, but when that didn't add up I turned my attention to bulbar onset.... I know it doesn't make sense, and my dr says it's just anxiety but I am just so SCARED!!!!
Even after reading that information? I mean, according to real ALS sufferers and medical information on the disease, there is NOTHING at all that points in that direction. It's like being afraid a shark is going to bite you and you live 500 miles from the ocean ;) Maybe it's something deeper rooted that you need to explore with professional help.
Positive thoughts
Thank you, fishmanpa, thank you : your post is incredibly helpful. I do know that from an outside perspective (like my family and dr) ALS looks unlikely, but health anxiety is incredibly powerful. But that post was just what I was reaching out for when I posted on here. Thank you
health anxiety is incredibly powerful.
As my beloved mom always said "it's the devil".
"Spinal onset ALS"
Huh?
Oh sorry! I've been googling too much! I think ALS either starts in the mouth and throat (bulbar onset) OR the limbs (spinal), not both at the same time (I think). So if people are experiencing symptoms that are jumping all over the place it is suggestive of anxiety (I hope!!!!) x
Dear Nomorepanic friends -
I'm here again, and heading back down the als rabbit hole, having dig out of it a few months ago (only to dive straight down a bowel cancer, breast cancer then brain tumour hole, but still....)
When I first suffered from the ALS fear, which was AWFUL and made me feel so desperate, I went to see a lovely neurologist who was so reassuring and kind I couldn't understand why I had been worried in the first place. I wished I could make all the other als-worriers on here benefit from her reassurance (she said she has people come into her office at least twice a week worrying about twitching and not one of them - in her entire career - has ever turned out to have have MND)
Anyway - last week I thought I found a sentence hard to say (it was: "thought if you were a reactor you were a reactor") and I suddenly felt this horror and burst of adrenaline inside, thinking perhaps this is bulbar onset. Since then I have been CONSTANTLY monitoring my voice to see if it is slurring and I think I do trip up over words a lot. I keep talking to myself when I am alone and recording my voice and listening back to it. In short I am behaving like a mad person. Which is awful, but I'm so worried I just can't stop. My family says my voice sounds completely normal and are getting very fed up with me asking about it.
And then this morning I was on the loo and I felt something strange in my bicep and I looked down and it was twitching!!!! Arrrrggggh!!! How can this be happening again. I feel in such a state of panic I don't know what to do.
I'm reaching out to you lovely people- please talk some sense into me...
Xxxxx
Read your own post...
Hi- about six months ago a muscle on the base of my thumb twitches all day everyday for four whole weeks! I totally panicked about ALS, and of course then started to get other twitches too: so eventually went to neurologist who was brilliantly reassuring.... and then the twitches went! Apparently the thumb is a very common place to twitch
Positive thoughts
Having been through the whole ALS nightmare a year ago, I can emphathize. Remember, "anxiety lies". Your fear is tricking you right now. You do not have ALS, you just have an extreme fear of it and it is taking over your thoughts. I wish there was a magic pill for this, health anxiety really is the hardest thing I have ever encountered in my life. Hang in there.
Thank you so much Fishmanpa and emmegee. Your words (and mine, fishmanpa!! ��) are EXACTLY what I need to hear. I think one of the awful things about the ALS fear isn't that it encourages hyper attention and OCD checking behaviours which not only make you feel unhinged, but also feed into the whole cycle.
It's funny - and sad - that recently I looked back on my previous ALS fear almost with fondness because it is was so OBVIOUSLY nonsense (unlike the one I had at that moment - I think it was bowel cancer - which was obviously NOT nonsense. ((only after a colonoscopy it turned out it WAS nonsense after all!! ��))). And yet here I am again believing it all over again. I haven't twitched for months and now I am again (or maybe just noticing it again?) and I am SO conscious of my speech that no wonder it sounds weird (to me, anyway, no one else seems to hear it)
Thank you guys. I cannot say what a valuable support I find this site!
Xxxx
I cannot say what a valuable support I find this site!
Xxxx
I agree. I feel so isolated, crazy, like I am the only one that feels like this, like it will never end. Hearing others going through similar struggles reminds me that I am not alone, not crazy, and that I have support.
My family and friends are very supportive but they really can't truly understand what anxiety and depression feel like if they have never been through it.
:bighug1:
I've had an intense bulbar ALS fear for six months now. It's ruining my life and mind. I am especially obsessed with my speech, and monitor it constantly. I hear myself tripping over words and slurring consonants and running words into one another, but as in your case no-one else has commented.
That said, I just tried your sentence and it's basically impossible to say clearly or with anything approaching normal speed. It's just an unfortunate and clumsy run of sounds, I think. English is sometimes like that.
Thank you so much melfish and I'm so sorry you are suffering too. You are right about that phrase I think- no one I've asked can say it properly.... BUT I now think I'm finding other words hard too. I did go through this before and came out of it eventually (onto something else of course, but still!)..... but I wonder if this time it is different, this time the slurring is REAL.
You say you have had this fear for six months .... do you get any comfort from the fact that you are not deteriorating? Or do you imagine you are? What triggered your fear?
Hugs
Jojo xxxx
One day I noticed my tongue curling at the tip, slowly and rhythmically, by itself! This lead to a massive panic attack and me in the ER. I asked the doctor whether this was the start of a neurological disease and he helpfully replied, "Well, it either is or it isn't". The curling stopped, but then I noticed my tongue quivers when I stick it out. I typed that into google, and you can imagine the rest. Since then I've noticed all sort of bulbar symptoms, but my speech is the thing that really worries me.
BUT it waxes and wanes, and sometimes I don't notice it at all, which I'm pretty sure wouldn't happen in ALS. I've read that the speech problems are sometimes confused with a stroke, because the onset is so sudden and dramatic.
I also think paying ridiculously close attention to something that should be more or less subconscious makes us move our tongue and mouth oddly, resulting in strained and imperfect enunciation. At least, that's what I hope it is ...
My tongue twitches when I stick it out too! I think everyone's does! It's only still (ish) when it's resting in the bottom of my mouth. Get anyone to hold their tongue out and you will see! And you are totally right. If you had ALS no one wld be able to understand you by now. Easy for me to say, harder for you to believe!
Xx
Ha, yes, it's easy for me to see you don't have it too. I'm blind when it comes to applying the same logic to myself
I am REALLY struggling with the ALS fear right now. It’s ruining me. Right now my tricep is thumping and I’m losing my mind.
So many twitching posts lol. This should show us all that twitching is common. I'm thinking my twitching came from me being in a constant state of panic for 3 years lol. I went from heart to brain eating Ameoba to vibrio to melanoma to lymphoma to colon cancer to brain tumor and then ALS. It started with my tricep twitching seen a neurologist then my right calf. Got an eng all good then the other calf then hand and so forth. Calves twitch all the time now and I'll get the freaky ass thumpers and flutters every now and then. You're gonna be ok just go on with your life and try to ignore them because they are harmless.
lol, one of the muscles around my shoulder blade has been bubbling and fluttering away all day. It must be the season for it :yahoo:
Oh! It's both awful and helpful at the same time to see that other people are having the same issues. I am so sorry you are suffering too- but thank you for giving me company in this hole!
Try to keep in mind what both my and somebody else's neurologist on here said: twitches without weakness are irrelevant.
But - I know - this is awful isn't it?!
I just don't know where to turn at the moment. I am in some sort of state of crisis. This morning I was worrying about a brain tumour and my speech "problems" disappeared because I was focusing on head sensations (which I'm not sure were really even there- but I'm not sure of ANYTHING anymore).
Then on a run this afternoon I began to wonder if my throats felt funny and then I felt it and wondered if it felt uneven so I looked in the mirror with a torch and I wonder if perhaps my soft palette rises slightly more on one side than the other.
When I went to a neurologist about my ALS worries in the spring she checked my palette and said it was "perfect". I'm not sure it is any different (I spent a long time studying it for irregularities then too), but perhaps it is slightly slightly lower on the right side. I am driving myself mad again- and making myself gag - poking around and examining myself.
I just feel so UNSAFE
Weep
Jojo xx
I've been through this. I don't need a torch either. It's starkly obvious. My uvula leans to the left, and the right side of my palate hangs lower as a result. it's even more noticeable when I say "ahhhh". I made myself sick with worry over it. But who's to say it hasn't always been like this? I'd never spent so long staring at my throat in a mirror before. My tongue also deviates on protrusion. It is not symmetrical either. You will find these kinds of issues if you look for them. I bet no-one diagnosed with ALS did, though. I bet they were too busy trying to get air when they actually aspirated.
Oh Melfish thank you so much for replying! I am in such a bad way at the moment I don't know which way is up anymore. Of course you are right. Asymmetry is normal of course it is. I am in such a state. I also noticed my head hurts a bit when I cough so maybe I have a brain tumour? Only that wouldn't explain the asymmetric palette..... honestly I don't remember the last time my HA was this bad!
Happy thanksgiving Melfish! Hope you have a worry free day!
Thanks, jojo, though I forget what a worry-free day is, lol. If you look through my old posts, you will see my uvula obsession became a running joke around here. It wasn't a joke to me though. It was terrifying. I've mostly stopped worrying about it, tbh (though your post did spike my fear a little!). There is actually a study where they found a deviated uvula in about a quarter of the subjects (all healthy).
---------- Post added at 10:01 ---------- Previous post was at 09:52 ----------
I just wanted to add, I understand how you feel, the dread and the panic. It's an awful state to be in. I've been living with this particular fear for six months now, and I have good days and bad with it. Fortunately, the days of sheer terror are becoming fewer and fewer. It's a process x
Dear Mel- I'm so so sorry if I spiked your fear. In the spring when I last worried about ALS I became obsessed with my ulvula too, which goes slightly left. The neurologist didn't comment and I've since noticed from YouTube that most ulvulas are wonky.
Hope that unspikes your fear. So sorry again
Xx
Oh no, please don't apologise! It was just a brief flicker. Haha, I used to trawl through google images looking for wonky uvulas. Didn't think to look on youtube. So you saw lots?
---------- Post added at 10:10 ---------- Previous post was at 10:09 ----------
Heh, it's so not normal to be discussing uvula angles on the internet with strangers :lac:
Haha no! But I think perhaps we are not normal ! Yes you can see all sortsL on YouTube! I'm not sure why but people seem to video the insides of their mouths. HOWEVER I only look for random healthy people videoing themselves doing party tricks with their uvulas (I know - right?!) NOT people showing off their diseases - coz that would send me into a total tailspin..
you're right. This conversation is totally not normal!:D
I hear you. I only look at incidental photos/videos of tongues. I don't wanna see no ALS tongues, lol
I feel it is my duty to talk to you about this.. I had this fear intensely.. maybe two years ago. Try not to obsess like this, if it were ALS it would be obvious to the Neuro. Something else that set me free was that if you got a diagnosis, this wouldn't help you... so what is the point in worrying? Just let it go and see if it progresses( chances are it won't) Use those CBT skills.. what are your chances that you have ALS? What is your proof? ( none you saw a Neuro and they weren't concerned.)
Some members may have noticed I have been worrying about pancreatic cancer recently (panic cancer!). Yesterday I had scan (not clinically necessary- privately arranged) and although I haven’t had any results my HA brain is already casting around for other possible reasons why I might be dying. And since I have been noticing that in bed at night, if I lie very still and think about it, I can feel odd little thumps and twitches here and there in my calves (and elsewhere), my mind has turned (BACK!!) to MND.
It was actually Pulisa who encouraged me to write about it here, so I am, just in case it helps others (and me!) to recognise the patterns in HA thinking.
One part of me sees my absurdity and the other part thinks.....”but maybe this time it is real ..”?
Thank you so much for listening!
Jojo x
Will you be wanting to book in with a private neurologist after getting the panic cancer all-clear, jojo?
If so, I think you should definitely stop yourself. Quite apart from reinforcing your HA behaviours you will be essentially pouring more money into the worried well private patients healthcare system. You'd be better off donating the fee to an MND charity.
"Neurological" symptoms are easy to find if you scan your body hard enough...but how do you relax your guard? xx
Will you be wanting to book in with a private neurologist after getting the panic cancer all-clear, jojo?
If so, I think you should definitely stop yourself. Quite apart from reinforcing your HA behaviours you will be essentially pouring more money into the worried well private patients healthcare system. You'd be better off donating the fee to an MND charity.
"Neurological" symptoms are easy to find if you scan your body hard enough...but how do you relax your guard? xx
Wise words as always Pulisa. I do a lot to fund doctors’ private school fees!. :whistles:
Take a deep breath, Jojo, and think of all the fun stuff you could be spending that money on instead.
Ok, firstly I am SO sorry for doing this. I must be going even madder than I already was. It’s been panic cancer, a brain tumour and now *effing* MND AGAIN!!! I can’t bare it.
But it’s real, the symptoms are REAL. I’m having fasiculations and they are mainly in one leg. Not one muscle, but one whole leg. Surely that’s bad? One muscle is ok, jumping randomly all over the body is ok, but one leg?? That’s a proper symptom of ALS. How can this be happening. Crying with fear and frustration. Bl**dy HA. Just feel so exhausted and defeated
I'm sorry JoJo. I don't know what to say really. At least you acknowledge it's anxiety and not some deadly illness.
I don't recall. Are you getting help for your anxiety?
Positive thoughts
I'm sorry JoJo. I don't know what to say really. At least you acknowledge it's anxiety and not some deadly illness.
I don't recall. Are you getting help for your anxiety?
Positive thoughts
Thank you so much for replying FMP. I know I have anxiety but I do genuinely think these symptoms are sinister. It’s like a nightmare coming to life. I’m waking up in the middle of the night, terrified, feeling these little pops and taps all over one foot. Just asking, given that these fasiculations ARE really happening, is it clear to you, an outsider, that this is my dragon playing with me again? I hate this so much.
I have had a lot of help with my anxiety yes, but am not in therapy currently.
Thank you so much again for replying..... it’s a little lifeline in this dark place.
Xxx
This is from the sticky. read it as many times as you need to.
There have been quite a few threads on the subject and the ALS rabbit hole is one of the toughest to get out of. I see members posting on the ALS forums and I truly advise not to do that as it's disrespectful to those suffering. On the forum there is a "READ ME" sticky that I want to copy here for those that entertain the thought they might have this. Please read it and let it sink in!
Positive thoughts
Do I Have ALS?
First, in spite of reading this, it is a question that can only be properly answered by a doctor seeing and examining you. We can offer an opinion as to whether your symptoms sound like our experience of ALS. We can give our best advice on whether to push for another opinion. However, first and foremost if you have a worrisome symptom see your doctor. If you have not yet done so and followed their recommendations don't expect us to say anything different
Symptoms
The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech. If you don’t have any of these, why are you here?
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work
See also EMG, weakness and atrophy
Atrophy
Atrophy, or muscle wasting, is a frequent early symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless.
Hyperreflexia
Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Other “Symptoms”—
Twitching
If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease..
This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."
Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately
Also, see Twitching, false alarm
Pain
If you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.
Other Issues—
Anxiety
Anxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.
AGE
For those of you who are under 30:
The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.
So let's do some numbers:
2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).
Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".
Please also take into account that a high proportion of young onset ALS is familial so if you do not have at least 2 blood relatives with ALS your chances are even less than above statistics suggest.
FAMILY HISTORY
Having one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum
EMGs
Does a dirty (abnormal) EMG mean I have ALS?
EMG, properly done, is the gold standard test for ALS. But an abnormal EMG can indicate hundreds of other, non-fatal, diseases. So listen to your doctor.
My EMG was done “too early”
EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.
Here is a simplified summary:
1. ALS causes nerves to die.
2. EMG detects effects of nerves dying.
3. For ALS, muscles get weak and atrophy when they lose their nerves (no pun intended).
4. Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALS
However, an abnormal EMG does not necessarily mean ALS so a so- called dirty EMG needs to be interpreted by your doctor. There are many other,more common things that will cause EMG changes and some of those findings will be PART of what is seen in ALS. Listen to your doctor and do not try to second-guess him/her
Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you
Another EMG question that is frequently asked is if I have ALS in one location but the EMG was done elsewhere in my body would it still show? The answer is maybe, however if you are having symptoms in several areas and the neurologist only tests one if that is negstive that is sufficient. There is no need to EMG every muscle that is symptomatic
You must also realize the doctors know their anatomy. Just because you see/ feel something in one specific location does not mean that is exactly where the needle goes. It may be above below or surrounding. If you have symptoms only in your left hand it is possible that an EMG of your right foot would miss something. But if it is your left hand and they examine that extremity don't worry
Positive thoughts
Thank you. I’m crying with fear and frustration. It is the localised nature of the twitches and really gets me. But I KNOW how infuriating I’m being. And I’m so sorry. And grateful for the time you’ve taken help me
Xxx
My neurological symptoms affected one leg too. They were extreme and I was referred for a day of testing at the Atkinson Morley Neurological Hospital.
It was anxiety.
Now I know this will be of no consolation to you, jojo, but it IS possible to have unrelenting weird symptoms which are entirely induced by the brain playing tricks on you. VERY possible particularly in view of your issues with HA. But I know you won't believe this.
Are you going to book an appointment with a neurologist? PLEASE have a read back over your previous threads? You are feeling unsafe and looking for answers. You are looking for "problems" and perceive that you've found them. Another trip to the neurologist will give you partial reassurance until the next set of symptoms which will leave you feeling unsafe again and the cycle continues...But you know this of course.
I'd just say be very careful as to what you decide to do next. In my view you would be better off spending money on seeing a therapist with an excellent understanding of HA xx
Dearest Pulisa - you have your own struggles and yet you go out of your way to help me and others - strangers to you - time and time again. I am so grateful and I don’t know how to thank you adequately. You also hit the nail on the head: i feel incredibly “unsafe”. I want to do whatever it takes to get rid of this feeling because it is, quite literally, unbearable. And you ARE RIGHT - I AM on the verge of booking an appointment with the same lovely neurologist I saw last time. But you are also right that this is fuelling the cycle. I know that. It is what my therapist also told me. Sit with the anxiety- don’t act on it.
So I will try to wait and reread my own threads, like you suggest. It’s so damn HARD though. Bl**dy HA!
Hugs and huge thanks to you
Xxx
Hang in there, okay? I know how hard it is and I'm thinking of you.
Thank you all. This site is such a lifeline - there are some true life angels on here.
Xxx
Concentrate on sitting tight. Acknowledging your symptoms and giving them importance in your mind will only keep them going. Your aim is to be able to reassure yourself without the support of a forum such as this one or by booking a neuro appointment no matter how lovely the neuro was. Being able to help yourself is such a huge skill and when you feel unsafe the natural instinct is to want to make yourself feel safe again by whatever means...but the means you choose need to be the healthy ones and the ones which will stand you in good stead in years to come. The ones you can generate for yourself xx
Concentrate on sitting tight. Acknowledging your symptoms and giving them importance in your mind will only keep them going. Your aim is to be able to reassure yourself without the support of a forum such as this one or by booking a neuro appointment no matter how lovely the neuro was. Being able to help yourself is such a huge skill and when you feel unsafe the natural instinct is to want to make yourself feel safe again by whatever means...but the means you choose need to be the healthy ones and the ones which will stand you in good stead in years to come. The ones you can generate for yourself xx
:hugs::hugs::hugs::hugs:
---------- Post added at 15:24 ---------- Previous post was at 15:21 ----------
Something tells me you are very good at this Pulisa. I know you have your own issues and yet - to my knowledge- you have never once asked for support yourself on here. (Of course I wish you would, sometimes at least: I’d love to be able to “give back” to you on occasion!!
(When I’m not mad, I am quite sane!!!)
Xxx
I've had to develop my own coping strategies because I can't rely on other people for support in real life, jojo. I'm meant to be the "coper" (I'm not really!:D) My issues go back decades and go beyond what this forum is all about so I keep schtum and just muddle on! xx
-
That’s hard. Or maybe not, if your strategies work. You are, after all, the person you can most rely on. I am more of a coper in real life - although occasionally that doesn’t work out too well (like today!!) . In fact I was unburdening to a dear friend this AM, who thinks I hide it “too well”, so people don’t realise I need help when I do. But on here I feel I can be warts and all, because you lot can just log off or not read my posts if you want - or need - to. And I find that quite a release. Funnily enough, you know more about my dragon battles than my real world people. I have to be a bit careful what I show them, and when, because they need me to be their Mama, or wife or daughter or friend. It is a genuine upside of the internet (I reckon - but I bet you don’t!!!!)
I can see your point about the forum being a release but it's a release of sorts because ultimately you're still in the grips of HA and do you feel safer after interacting with people in a similar situation on here?
I can see your point about the forum being a release but it's a release of sorts because ultimately you're still in the grips of HA and do you feel safer after interacting with people in a similar situation on here?
Yes
I think this place can feel like a safe space when you know the HA is making you crazy - I'm here because it's an area where I know if I'm not able to fake normalcy for a while, people will recognise that there's a middle ground between sane and insane.
I can be deep down the rabbit hole (earlier this week I was in full-on insanity mode owing to the scary symptoms du jour) but I'm always aware of my anxiety making me irrational, and it's good to have a space where I can discuss that irrationality without being written off as totally broken.
I think it's a very good thing if you both feel safe on here. That's the main purpose of a site like this but you both are not in denial of how your HA affects you mentally and physically and that's half the battle. I think you are in the minority though of people who post on here.
There is absolutely no way either of you are insane by the way! Just tormented up to your eyeballs! Far be it from me to give you any advice because I'm struggling each and every day but just can't talk about it so what does that make me? Not as healthy as you two!:D xx
Pulisa, I can't talk about the half of it ;) I'm a long-term lurker and thanks for all the advice you've given other people that's also helped me.
I'm really pleased if something I've said has helped you in some small way. I'm glad you have emerged from your lurking "mode" to contribute on here because the advice you give is spot on.
I think this place can feel like a safe space when you know the HA is making you crazy - I'm here because it's an area where I know if I'm not able to fake normalcy for a while, people will recognise that there's a middle ground between sane and insane.
I can be deep down the rabbit hole (earlier this week I was in full-on insanity mode owing to the scary symptoms du jour) but I'm always aware of my anxiety making me irrational, and it's good to have a space where I can discuss that irrationality without being written off as totally broken.
Totally totally agree. Relationships with real people are complex things and if you project your “inner madness “ to your loved ones too often it affects the nature of your relationship with them. Unavoidably. But here, there is none of that complexity. Which can be very liberating.
And as for Pulisa’s question about whether interacting with others in the same boat actually helps, I say this: yesterday I did NOT make an appointment with the neurologist. I looked at her number on my phone, but I didn’t call. And if it wasn’t for you guys I WOULD have done. It really is that simple. Wailing on here was just enough of a release to hold me off. And today, just this minute anyway, the dragon is a little bit quieter.
It’s an ongoing - and EXHAUSTING- battle, but having others fighting along side HELPS.
Really well done on not making that appointment!! Best thing you (didn't) do yesterday!
I think you need people to challenge you though as they fight alongside you. Also I have found that the best doctors are the ones who are straight with you and put things in perspective.
So proud of you for not making the appointment! I've spent the past few days fighting the urge to run to the GP over something that can be raised at an appointment I have after Christmas, and even just sitting on my hands for 24 hours has made an immense difference.
So proud of you for not making the appointment! I've spent the past few days fighting the urge to run to the GP over something that can be raised at an appointment I have after Christmas, and even just sitting on my hands for 24 hours has made an immense difference.
Yay to you too!! Sitting it out is the way to go! Bloody hard though!
So proud of you for not making the appointment! I've spent the past few days fighting the urge to run to the GP over something that can be raised at an appointment I have after Christmas, and even just sitting on my hands for 24 hours has made an immense difference.
Yes, yay BlueIris! Well done! Do you want to talk about it on here?
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I've had to develop my own coping strategies because I can't rely on other people for support in real life, jojo. I'm meant to be the "coper" (I'm not really!:D) My issues go back decades and go beyond what this forum is all about so I keep schtum and just muddle on! xx
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I know you have to be a coper in real life Pulisa- but you don’t on here, I’m sure you know that (although maybe you’ve found a strategy that works well for you)
Xxxxx
Urgh, Jojo, it's awkward. Had a bit more spotting, went through the usual cancer worries and then decided I'd basically been working and sleeping all month and that it probably wasn't worth visiting the GP until I see how my period goes and if it starts and stops at the approximate right time.
Did a lot of really idiotic self-checking until I spent a while reminding myself of all the sensible advice I'd found on here, though. Am now capable of going three whole hours between bathroom visits and (mostly) not checking when I'm there, which has given me back a significant chunk of my life.
Urgh, Jojo, it's awkward. Had a bit more spotting, went through the usual cancer worries and then decided I'd basically been working and sleeping all month and that it probably wasn't worth visiting the GP until I see how my period goes and if it starts and stops at the approximate right time.
Did a lot of really idiotic self-checking until I spent a while reminding myself of all the sensible advice I'd found on here, though. Am now capable of going three whole hours between bathroom visits and (mostly) not checking when I'm there, which has given me back a significant chunk of my life.
Sounds very sensible. I’ve had spotting too - it’s very common at our kind of age!!
Exactly. Our GP does walk-in appointments but chances are I'd land up with one of the male doctors who invariably tell me to get a smear test (I will, but once I'm in a fit state to deal with the anxiety of waiting for results again. I've slept with a few virgins plus one more experienced man I've been married to for 16 years, so I know that my relative risk is low).
If I wait, I'll be able to see the brilliant female GP who actually pays attention to what I say, not to mention giving it a month to see if things settle down.
Only thing I hate right now is that I'm working half the week completely solo which provides way too many opportunities for unhelpful Googling ;)
You know what will happen if you pay Dr Google a visit, BlueIris and it sounds to me as if you have a very sensible plan in place re waiting to talk to your female GP as arranged. Managing to go 3 hours without checking is very impressive and no mean feat.
I can't offer advice on this because I had a hysterectomy at 32 which meant one less area to worry about:D and at my advanced age now, every little helps..xx
You know what will happen if you pay Dr Google a visit, BlueIris and it sounds to me as if you have a very sensible plan in place re waiting to talk to your female GP as arranged. Managing to go 3 hours without checking is very impressive and no mean feat.
I can't offer advice on this because I had a hysterectomy at 32 which meant one less area to worry about:D and at my advanced age now, every little helps..xx
Not so advanced Pulisa! My granny is 103 and still enjoying life!
That's incredible and a good indicator for a long and healthy life for you, jojo!
That's incredible and a good indicator for a long and healthy life for you, jojo!
Haha! She IS awsome. And funnily enough, when I asked her recently if she wished she had done anything differently in her life she said “I wouldn’t have worried so much”!!!
(I think she might be to blame for my anxiety because my parents are the most unanxious people possible)
One commandment for tomorrow...
"Thou Shalt Not Ring The Neurologist"...
One commandment for tomorrow...
"Thou Shalt Not Ring The Neurologist"...
Hahah
And maybe
“Thou shalt not endlessly test how fast thou can tap thy foot”
---------- Post added at 21:47 ---------- Previous post was at 21:40 ----------
“Because it makes thy family think thou is mad”
"Though Shalt Not Scour The Internet For Evidence That Thou Hast Developed Sinister And Pervasive Neurological Illness......Because Thou Knowest What Will Happen..." (from bitter experience)
I always did the standing on one leg with my eyes closed thing, then panicked because I was useless at it and clearly about to have a stroke.
I always did the standing on one leg with my eyes closed thing, then panicked because I was useless at it and clearly about to have a stroke.
Haha ME TOO!!! Though in my case it meant I had a brain tumour.
Eventually I started getting leg pain from it and had to convince myself it wasn't a DVT.
Bloody, bloody health anxiety. Period started yesterday, was up half the night worrying that it wasn't heavy enough and that it was just a particularly heavy instance of spotting. Like the cramps aren't enough of a hint!
Eventually I started getting leg pain from it and had to convince myself it wasn't a DVT.
Bloody, bloody health anxiety. Period started yesterday, was up half the night worrying that it wasn't heavy enough and that it was just a particularly heavy instance of spotting. Like the cramps aren't enough of a hint!
Urgh - poor poor you. And yes bloody bloody health anxiety ! I’ve been up half the night monitoring twitching around my body, fearing - and finding! - that they happen slightly more in the arch of my left foot..... And that it is the beginning of MND. Hang in the blueiris - I’m right with you!
Xx
It's so good to be able to talk to somebody who understands this nonsense!
My husband gets it, but I know it's tough for him and he finds it difficult when I try to laugh about how nuts I am.
It's so good to be able to talk to somebody who understands this nonsense!
My husband gets it, but I know it's tough for him and he finds it difficult when I try to laugh about how nuts I am.
My family finds it very frustrating. They prefer it when I laugh about it I think, but really they just want it to go away!
If you can laugh about it that's great but I know that you are deadly serious about it really. Is there anything that would convince you that you don't have MND following hot on the heels of panic cancer? Are you desperate to make an appointment with the neurologist? (I understand too, you know)
If you can laugh about it that's great but I know that you are deadly serious about it really. Is there anything that would convince you that you don't have MND following hot on the heels of panic cancer? Are you desperate to make an appointment with the neurologist? (I understand too, you know)
I am, but I haven’t. Instead I am doing endless strength tests and probably making the twitching worse...,.,
Please don't do this to yourself, jojo. It would be better to admit defeat and make that appointment if you are going to punish yourself like this. I know there will be "something else" to follow on though..Would you consider going back for some professional therapy to help you get your life back? xx
Jesus H. Christ, how long do you think it takes ALS to set in? This thread will be 2 years old soon. A lot of people with ALS are DEAD at that point. If you're not in rigorous therapy and medication treatment, then you have no one to blame for your suffering but yourself.
Please don't do this to yourself, jojo. It would be better to admit defeat and make that appointment if you are going to punish yourself like this. I know there will be "something else" to follow on though..Would you consider going back for some professional therapy to help you get your life back? xx
I know. I do wish I could see my own GP, who knows my history, but getting an appointment with her is almost impossible. And you are right: there WOULD be something else. SIIIIIGGGHH. Thank you so much for caring though Pulisa - it means such a lot
Xxxx
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Jesus H. Christ, how long do you think it takes ALS to set in? This thread will be 2 years old soon. A lot of people with ALS are DEAD at that point. If you're not in rigorous therapy and medication treatment, then you have no one to blame for your suffering but yourself.
Yes I know. But it clearly wasn’t ALS before was it? But that doesn’t mean it isn’t now..... (just saying it as an HA brain sees it!!)
What do you think your GP would say if you were able to see her?
I think she would talk about my anxiety......but I suppose I would also like to check what she thinks about twitches mainly (but not exclusively) in one area....
I would hope that she wouldn't engage in checking out your symptoms. My GP wouldn't. Giving your symptoms validity doesn't help you to manage HA.
So how does your gp distinguish between anxiety and real illness?
She knows my views on not having any tests other than those based on clinical need and won't check out perceived neurological symptoms other than sometimes doing a brief test of strength. She is abrupt and to the point and I like this approach because it helps me.
She sounds pretty great - glad you have somebody like that on your side!
She knows my views on not having any tests other than those based on clinical need and won't check out perceived neurological symptoms other than sometimes doing a brief test of strength. She is abrupt and to the point and I like this approach because it helps me.
Yes, it’s great you have someone you can work with and who knows you well enough to treat you with confidence . And like you said to me, the anxious brain has a field day with neurological symptoms :wacko:
Been there, done that with neuro symptoms..It's incredible what the brain can do when it gets a bee in its bonnet.
I've got a routine mammogram and my very first bowel screening test in Jan (the test kit arrived today!) so will be tested in my HA resolve but what will be will be!
Been there, done that with neuro symptoms..It's incredible what the brain can do when it gets a bee in its bonnet.
I've got a routine mammogram and my very first bowel screening test in Jan (the test kit arrived today!) so will be tested in my HA resolve but what will be will be!
Your resolve is inspirational (evidenced by your “no testing without clinical need” rule - which you stick to!!).
And yes it is truly amazing what the brain can do. I have a book called something like “it’s all in your head”, by a neurologist, which documents the most incredible ailments- blindness, paralysis - which were real, but eventually found to be psychosomatic in nature. It’s quite fascinating really
My friend's daughter has a functional neurological condition-no organic cause found but she is unable to walk for periods of time and then things return to normal for a while until the next episode. She is a high achiever but a perfectionist and has to work really hard at college. She is also anxious.
The brain and its functioning is such a mystery. I don't think even the most eminent neuroscientists will ever truly be able to fathom its depths and secrets.
I am feeling so desperate today and I know there is nothing anyone can say to help me, really, but maybe some virtual hugs?
I am having twitches all over, but particularly under my left foot and today I noticed what appeared to be atrophy on that side. I know pictures of body parts are not really allowed and I’m sorry. I could just really do with some sensible objective eyes.
I did show a gp (not my own), who said they are not entirely symmetrical but he wouldn’t call it atrophy.
Sorry sorry sorry. I’m really failing here
Sorry to hear you’re struggling with this!
Perhaps your foot has always been like it and you’re only noticing it now because you’re tuned in to symptoms? I’ve had that happen before such as when I was worried about brain tumour I noticed one pupil was a lot bigger than the other. It wasn’t in my mind, dr could see it too, but like he pointed out I’d probably had it for a while or forever. Still have it now, 8 years after that episode.
The twitching can also be caused by many things, when I was in that brain tumour episode the bottom of my left foot twitched all the time. I had nerve conduction tests and everything. After the MRI was clear it went away (well I prob still had it from time to time but didn’t focus on it)
Hope you can do something relaxing today to feel better!
Here is the picture. Sorry - horrible feet!
https://www.nomorepanic.co.uk/attachment.php?attachmentid=4377&stc=1&d=1545395243
Just a reminder that this thread started in May of 2017! You don't have ALS. Our bodies are asymmetrical and that's the end of the story. Posting pics of normal body parts is a sign things are getting out of control. Perhaps it's time to revisit therapy and meds if you're not currently taking them. You've been going around in circles for quite some time :weep:
Hope you feel better soon.
Positive thoughts
You don't have ALS. Your brain has convinced you that you do.
Having said this, no comment or objective view of your feet is going to make the slightest bit of difference to what you are thinking...
Jojo, you have to have some professional real life therapy. Forums can't give you the help you need xx
ScaredBBOY
21-12-18, 13:26
Well in 2014 was when I first found out I had HA ... I seen something on ALS and my father has a different type of neuralgic disease so My fear of als fear ramped up and I really believed I had als ... muscle were twitching all over my body I had eye fluatters (scared of MS) I even had bouts of feeling unbalanced my body was literally swaying uncontrollably it was all anxiety and lasted about two months I started to focus on other things and all symptoms deminshed I still get twitching every now and then but it’s nothing and goes away I moved on from that fear
Wish I could do the same for my new fears ... smh
---------- Post added at 08:26 ---------- Previous post was at 08:25 ----------
Hope my story helps
Just a reminder that this thread started in May of 2017! You don't have ALS. Our bodies are asymmetrical and that's the end of the story. Posting pics of normal body parts is a sign things are getting out of control. Perhaps it's time to revisit therapy and meds if you're not currently taking them. You've been going around in circles for quite some time :weep:
Hope you feel better soon.
Positive thoughts
God bless you FMP!
---------- Post added at 13:43 ---------- Previous post was at 13:41 ----------
You don't have ALS. Your brain has convinced you that you do.
Having said this, no comment or objective view of your feet is going to make the slightest bit of difference to what you are thinking...
Jojo, you have to have some professional real life therapy. Forums can't give you the help you need xx
I know dear Pulisa- I feel wretched and I do need to seek some sort of help. I was doing better for a while and right now I am as bad as ever. Sorry for venting :weep:
---------- Post added at 13:49 ---------- Previous post was at 13:43 ----------
Well in 2014 was when I first found out I had HA ... I seen something on ALS and my father has a different type of neuralgic disease so My fear of als fear ramped up and I really believed I had als ... muscle were twitching all over my body I had eye fluatters (scared of MS) I even had bouts of feeling unbalanced my body was literally swaying uncontrollably it was all anxiety and lasted about two months I started to focus on other things and all symptoms deminshed I still get twitching every now and then but it’s nothing and goes away I moved on from that fear
Wish I could do the same for my new fears ... smh
---------- Post added at 08:26 ---------- Previous post was at 08:25 ----------
Hope my story helps
Thank you - it does help very much. And in fact I have a similar story myself.... the beginning of this thread was a different ALS panic for me. When I stopped worrying about it the symptoms went. I KNOW how this looks. I know it obviously looks like anxiety but the difference in my feet is REAL - but maybe that’s always been there? I just don’t know what to think anymore.
I’m the boy who cried “wolf” (but he got eaten in the end!!!)
No need to apologise. No need at all but PLEASE make it your absolute priority to book an appointment with a therapist who has experience with HA? I'd also say don't help others who are also struggling with perceived ALS? You just haven't got the mental resources at the moment and will be suggestible to any additional symptoms they have too xx
The only thing "eating you up" is HA. What happened to panic cancer and your utter conviction that you had that?
Sorry to hear you’re struggling with this!
Perhaps your foot has always been like it and you’re only noticing it now because you’re tuned in to symptoms? I’ve had that happen before such as when I was worried about brain tumour I noticed one pupil was a lot bigger than the other. It wasn’t in my mind, dr could see it too, but like he pointed out I’d probably had it for a while or forever. Still have it now, 8 years after that episode.
The twitching can also be caused by many things, when I was in that brain tumour episode the bottom of my left foot twitched all the time. I had nerve conduction tests and everything. After the MRI was clear it went away (well I prob still had it from time to time but didn’t focus on it)
Hope you can do something relaxing today to feel better!
Thank you so much for sharing that story Aussie - it really helps. And it is amazing what differences you can notice in your body if you try. Last time I worried about ALS it was because of twitching in my hand. I noticed “atrophy” then too....
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No need to apologise. No need at all but PLEASE make it your absolute priority to book an appointment with a therapist who has experience with HA? I'd also say don't help others who are also struggling with perceived ALS? You just haven't got the mental resources at the moment and will be suggestible to any additional symptoms they have too xx
The only thing "eating you up" is HA. What happened to panic cancer and your utter conviction that you had that?
Well.... I don’t usually mind except when they insist on linking to stories where fasiculations were the only symptoms of ALS!!!(:wacko:)
Anyway, people go out of their way to help me, so I like to try if I can. It’s so much easier to see faulty thinking in other people!! :blush:
A lot of people are just interested in their own symptoms though..They won't listen to your advice and it will just accentuate your own ruminations and absorption in an illness which is scaring the living daylights out of you the more you focus on it and look for "signs"..Christmas is a time of such insecurity and uncertainty-get as much support as you can from your loved ones xx
A lot of people are just interested in their own symptoms though..They won't listen to your advice and it will just accentuate your own ruminations and absorption in an illness which is scaring the living daylights out of you the more you focus on it and look for "signs"..Christmas is a time of such insecurity and uncertainty-get as much support as you can from your loved ones xx
My poor poor loved ones! I don’t want to be mad for them. They need me.
I’ll be mad for you lovely people instead :hugs:
Thank you though, Pulisa. You think your replies don’t help but they really really do. Sometimes I just need to say what’s in my head because it’s eating me alive, and having someone say something sane helps relieve the pressure.
Hugs and kisses to you
Xxxx
So just a little update. Today I feel a little calmer and am noticing my fasiculations less. Thank you so much, everyone, for being there during the crisis.
I am constantly amazed by the symptoms the brain can generate. You worry about ALS, you get fasiculations and you see atrophy; you worry about pancreatic cancer you get abdominal pains; you worry about a brain tumour and you get blurred vision, dizziness and headaches. The power of the mind - it is indeed an extraordinary thing! If only it was easier to control.....
Xxx
So just a little update. Today I feel a little calmer and am noticing my fasiculations less. Thank you so much, everyone, for being there during the crisis.
I am constantly amazed by the symptoms the brain can generate. You worry about ALS, you get fasiculations and you see atrophy; you worry about pancreatic cancer you get abdominal pains; you worry about a brain tumour and you get blurred vision, dizziness and headaches. The power of the mind - it is indeed an extraordinary thing! If only it was easier to control.....
Xxx
But then psychiatrists, psychologists and the Big Pharma drugs companies would be redundant..!:D
Am very pleased that you have got some relief..Ankiety Joe's posts are very informative and insightful on this huge topic xx
I’m such an idiot - and so frustrated with myself. It’s this one AGAIN for me. There is no need for anyone to reply really- I’m just logging it so that I can keep a record of my own stupid neuroses. I’ve had a lot going on in the real world recently and I think my mental health has suffered- and my HA is spiking again. Once again I feel I am slurring my words and am shutting myself away to record myself saying certain phrases - like “it’s the tradition”, again and again, which I feel I pronounce badly. In short I’m behaving in quite an unhinged way. It’s so stupid - and yet I believe it. The fear is real.
xxx
I have read all your posts in this thread . I have been going through exactly the same as you with the als fear for nearly 3 years now . I sympathise greatly .
So..... here I am again..... back with one of my old “favourites”. It should seem absurd, but it’s real and it’s so so scary. Yet again, I am terrified I have als and yet again I feel so desperate and so low and so on the edge of tears all the time.
Recently I have been waking up with a stiff neck a lot, which sometimes takes much of the day to loosen off and stop hurting. Then a couple of days ago I had a muscle in my left arm, near my elbow, which was twitching repeatedly. That seems to have stopped now, but last night a muscle in my should twitched. So I got worried about ALS, and did the thing I shouldn’t have: I googled! Then I saw something which said early als symptoms- such as stiff necks (!!!!!) - are often dismissed. So then I spiralled...... and started doing all sorts of strength tests and finding that, sure enough, my left arm is a bit weaker than my right.
im just posting this to get it off my chest really. And also to ask: does it sound like I am adding 2 and 2 and getting 435??
Xxx
You're spiralling. Drop me a message, okay?
Oh Sarah..... thank you so much for replying. I am spiralling- totally. I will message you later xxx
Any time you want - thinking of you xx
I am still burrowing down into this damn rabbit hole! Now I’ve slipped into my awful old pattern of self checking.... doing various strength tests multiple times a day, monitoring my body for any twitches (there are several), yawning (I read this can be a symptom and then BAM I need to yawn all the time, wondering if my legs feel funny when I walk (they do a bit) and recording myself saying tongue twisters to see if they sound more slurry than last time I did recordings (last time I was in this horrid stinky hole. I have a whole library full of recordings !)
I feel mad and unhinged and very very scared.
Deeper and deeper I go. I wonder if it is something to do with coming off my AD’s a month ago? I am now panicking about asymmetry and twitching in the arches of my feet. I take comfort from this thread and can see that I worried about this very thing - foot asymmetry and twitching - over two years ago I think. Also when I focus on my feet the other symptoms seem to stop or become less obvious- the yawning- and the twitching in other places. Also I don’t think I’ve lost any strength. But..... I’m very scared right now
Deeper and deeper I go. I wonder if it is something to do with coming off my AD’s a month ago? I am now panicking about asymmetry and twitching in the arches of my feet. I take comfort from this thread and can see that I worried about this very thing - foot asymmetry and twitching - over two years ago I think. Also when I focus on my feet the other symptoms seem to stop or become less obvious- the yawning- and the twitching in other places. Also I don’t think I’ve lost any strength. But..... I’m very scared right now
Oh Jojo.... 4 years and you're still in the rabbit hole for no reason :weep: At this point, I don't know what anyone could say to help you :shrug: This is truly a mental illness, not a physical one. I don't know what you're doing to treat your real illness in real life but truly, real life professional help for your real mental illness at this point is the only option I can think of to help you, especially in light of your post history :hugs:
Positive thoughts
Oh Jojo.... 4 years and you're still in the rabbit hole for no reason :weep: At this point, I don't know what anyone could say to help you :shrug: This is truly a mental illness, not a physical one. I don't know what you're doing to treat your real illness in real life but truly, real life professional help for your real mental illness at this point is the only option I can think of to help you :hugs:
Positive thoughts
Thank you so so much for replying. Just writing a it down helps, but getting a reply, especially from you, helps even more. To be fair I haven’t spent the last four years entirely down the als rabbit hole- I’ve come up for air sometimes and even popped down other holes, like the brain tumour burrow and the panic cancer cave. I do know I’ve got a mental illness. That’s why I post here and not somewhere else. And actually, come to think of it, I’ve been almost 2 years out of the als hole, which is why it is so very lucky I have this thread. My memory is so poor these days if I didn’t I would think all my scary symptoms are entirely new and been in even more of a state than I am now. Thank goodness for NMP
Hope you’re ok my lovely. Sorry things are messy at the moment. Anything I can do to help? Xx
Sent from my iPhone using Tapatalk
Hey Jojo
I’m so sorry to hear you are going through this again. It’s is absolutely awful and I know just how bad you can lose yourself in the hole.
I’m 2.5 years now of MND fear and I must admit the last 6 months I’ve been doing great. I’ve had no twitching or any of my other crazy symptoms and rarely thought about it .
Recently had a bad about of anxiety and suddenly my twitching is back! It just shows you how crazy and powerful your mind can be .
I’m trying not to fall Over the edge back into the hole but it’s so hard.
I really hope you are okay and I’m always here to chat . Our mind can play terrible tricks on our body and I truly believe anxiety is the culprit for all your symptoms x
Hope you’re ok my lovely. Sorry things are messy at the moment. Anything I can do to help? Xx
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Oh Scass - thank you so much for replying and just you doing that, and being there, helps so so much. Hope all is ok with you?
Hey Jojo
I’m so sorry to hear you are going through this again. It’s is absolutely awful and I know just how bad you can lose yourself in the hole.
I’m 2.5 years now of MND fear and I must admit the last 6 months I’ve been doing great. I’ve had no twitching or any of my other crazy symptoms and rarely thought about it .
Recently had a bad about of anxiety and suddenly my twitching is back! It just shows you how crazy and powerful your mind can be .
I’m trying not to fall Over the edge back into the hole but it’s so hard.
I really hope you are okay and I’m always here to chat . Our mind can play terrible tricks on our body and I truly believe anxiety is the culprit for all your symptoms x
yes- stay away from the edge of that hole!! Sometimes, when I am well, I think I am more in control of it than I am.... but it’s so easy for a little trigger to send you toppling down if, Alice in wonderland style, quite out of control.
And it’s so interesting what you say about the twitching. Right now my twitches are crazy.... popping up all over the place.... just like they have been all the times before when I have worried about MND.... but when I am good either they aren’t there, or my brain doesn’t perceive them (can that really be possible??). I do agree the brain is incredibly powerful, particularly in the context of neurological disorders. I think I remember the neurologist I saw telling me that 1 in 4 patients she sees have “functional neurological disorders”. In other words they look like they have something very wrong neurologically but there is actually no physical cause. And cases like that are very closely tied to anxiety. It is interesting when you look at it like that. But when you are stuck in it, it’s just plain terrifying.
Feel free to chat to me any time.... and hope things improve for you before any kind of spiral happens xx
Oh Scass - thank you so much for replying and just you doing that, and being there, helps so so much. Hope all is ok with you?
I’m good thanks lovely. Plodding on...
Xx
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yes- stay away from the edge of that hole!! Sometimes, when I am well, I think I am more in control of it than I am.... but it’s so easy for a little trigger to send you toppling down if, Alice in wonderland style, quite out of control.
And it’s so interesting what you say about the twitching. Right now my twitches are crazy.... popping up all over the place.... just like they have been all the times before when I have worried about MND.... but when I am good either they aren’t there, or my brain doesn’t perceive them (can that really be possible??). I do agree the brain is incredibly powerful, particularly in the context of neurological disorders. I think I remember the neurologist I saw telling me that 1 in 4 patients she sees have “functional neurological disorders”. In other words they look like they have something very wrong neurologically but there is actually no physical cause. And cases like that are very closely tied to anxiety. It is interesting when you look at it like that. But when you are stuck in it, it’s just plain terrifying.
Feel free to chat to me any time.... and hope things improve for you before any kind of spiral happens xx
How many times have you diagnosed yourself with MND, Jojo? You say the link between FNDs and anxiety is interesting but does that mean that you don't believe one word of it in relation to your own symptoms? xx
How many times have you diagnosed yourself with MND, Jojo? You say the link between FNDs and anxiety is interesting but does that mean that you don't believe one word of it in relation to your own symptoms? xx
Thank you so much for looking out this thread Pulisa. I know you don’t like ALS posts and I know you did it just for me. Yes. I know. You make a very good point. Like I said, there is a rational me; and a catastrophist me! And when I am in the storm of anxiety I am never quite sure which one is telling the truth. But- as usual, your words really help me. Xxxx
Have you researched into the link between FNDs and anxiety disorders though? Just to make a change from the self-testing regime? Even if you don't believe a word of it.
Do you think going back on sertraline may help a bit with the "catastrophist you"? Just to help you get more of a hold on the physical manifestations of your distress? xx
Yes I am certain going back on sertraline would help- ssris seem to work for me (by “work” I mean they get me to a level where I can function...). But I knew coming off them would result in an increase in anxiety, at least in the short term, and I had warned myself to expect and accept it. So I will keep going for a little longer. If it doesn’t ease, and I continue to be unable to function in the way I want to....I will admit defeat. Or partial defeat and go onto a lower dose than I was on before.
And good idea about researching the link between FND and anxiety disorders. I imagine they are even more common amongst health anxiety sufferers, and in particular those who are anxious about neurological disorders. Research like this would probably be more healthy than the endless locked-in-bathroom strength testing!!
Have you researched into the link between FNDs and anxiety disorders though? Just to make a change from the self-testing regime? Even if you don't believe a word of it.
Do you think going back on sertraline may help a bit with the "catastrophist you"? Just to help you get more of a hold on the physical manifestations of your distress? xx
What do you get out of the locked-in-bathroom rituals? What would you get out of looking into FNDs and anxiety disorders? Some neurologists specialise in FNDs so there are so many complexities to consider and you may enjoy getting your teeth into a topic which is challenging but illuminating? xx
I shall attempt to do this Pulisa. And also I am going to reconsider sertraline again. My doctor (who, yes, I’ve spoken to !!)has suggested it may be necessary....
What do you get out of the locked-in-bathroom rituals? What would you get out of looking into FNDs and anxiety disorders? Some neurologists specialise in FNDs so there are so many complexities to consider and you may enjoy getting your teeth into a topic which is challenging but illuminating? xx
Guess what Pulisa?! There is a whole BOOK about FND!!
https://en.m.wikipedia.org/wiki/It's_All_in_Your_Head_(book)
Well..... about psychosomatic illnesss- but the author is a neurologist so I think it’s a lot about FND. Paralysis, blindness, all sorts! What our clever (and destructive!!) brains can do!
My ex neighbour's daughter developed an FND at 18 and she had to use a wheelchair as she lost the use of her legs. She's 20 now and much better but yes...the brain can play terrible tricks on you.
Are you going to order the tome?!! Would it help you make sense of this topic because it's a complex one which is taken very seriously by specialist neurologists?
I have been doing better, and trying really hard, i promise. But I am really struggling today and I need to talk about here, because my family understandably get fed up. Since this thread is a couple of years old I must seem like a lost cause but I do have periods of “remission” and you guys are often responsible for those. Your “reality checks” help so so much.
Ok so here goes. I suffer from body wide twitches, especially (or maybe exclusively??) when I am worrying about MND. I worry especially much, though, when the twitches seem to be happening more in one leg than the other. Last night they were in my left thigh. So this morning I have been sucked into a quagmire of self testing and have discovered my left leg is weaker. If I stand up from a low bench using only one leg I find it MUCH easier on my right. In fact, depending on how low the bench is, I can hardly do it with my left leg. Am I being silly? Is this an irrational worry? Thank you so much in advance xxxx
Ren-in-Black
14-07-21, 03:42
Hi jojo, I'm new here but my understanding is that with ALS, you wouldn't be able to use the leg at all. Which you are able to do, even though it is harder. Also I think both our arms and legs have one that is dominant and used more than the other, so would naturally be stronger. And the brain knows this when it is trying to balance the body (such as when we are using only one leg). But I do understand your feelings. I was cleared by a neuro last year but still get fearful and have doubts whenever I twitch in my left hand. Sorry you are going through this.
Thank you so much for replying Ren in Black. I have had a long term fear of als, which waxes and wanes. So I am quite familiar with strength testing. But this particular “test”, of trying to stand up one legged, it new to me. But the fact that it is MUCH easier using my right leg has sent me into a stupid spiral. I can one legged wall sit for similar times on each leg but for some reason this is really unequal.
You've found a new test and you've found perceived discrepancies in your body's responses which is great news for your neuro radar but very bad news for your mental health,
We all have dominant sides but unless we have HA and are searching for anything to confirm the feared diagnosis we are usually unaware of this. How does strength testing help you to manage your HA, jojo? What benefit do you get from it?
I'm really sorry you are so tormented xxx
Dear lovely Pulisa - thank you so much for replying. You are right about everything. If I didn’t have HA I wouldn’t be testing and I would never have noticed the asymmetry. And now I have made my muscles so so sore from the exertion involved in all my hours of self “testing” that I cannot even do basic tasks like sitting down on a chair without pain and/or lowering myself down like a 90 year old. And I do feel very weak. But this weakness must surely be self induced??
But I feel so very very anxious. My brain is telling me it’s real this time (of course). My doctor says try some diazepam….. have you ever tried this? Does it work? Xxxx
You are presuming "asymmetry"..so you have already convinced yourself that you have asymmetry. A neuro may take a different view?
"Hours of self-testing"..."weakness"..I'm not surprised. I'd be knackered too with all that over flexing and adrenaline.
Yes I love diazepam which I use for unbearable agitation. It works, jojo. Just takes the edge off and makes you feel more human and able to function xxx
So here I am again- and once again, no need to reply. You lot have helped me so much already. Mainly I am posting as a log to myself, because reading back over this thread is a good reality check for me. I’ve moved in lightening speed from limb onset als to bulbar onset. The twitches have given way to perceived slurring. And once again I am recording myself and convinced I am slurring. I find certain phrases difficult and then i panic and repeat and repeat the same phrase to analyse my speech. Also my mouth has started to feel tired when I eat (this one is actually a new symptom to me. But I must remind myself it came on AFTER I started worrying about als). Swallowing also feels awkward and all wrong.
Sending love Jojo. It’s horrible to be in the middle of a spiral. Hope you find your way out soon x
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Awwww thank you Scass. You are so kind to reply. Intellectually I can see the silliness. I mean, it’s just not at all sensible, is it, to jump from one type of MND disease to another - with an entirely new set of symptoms?
And yet the fear…… that is definitely real. It’s so annoying because I had months of wonderful remission before this severe bout of acute HA, which began in about May, I think, a month or so after I stopped meds.
This thread is really helping me though, with my self awareness…..
How are you though Scass? Are you having a good summer?
xxxx
So here I am again- and once again, no need to reply. You lot have helped me so much already. Mainly I am posting as a log to myself, because reading back over this thread is a good reality check for me. I’ve moved in lightening speed from limb onset als to bulbar onset. The twitches have given way to perceived slurring. And once again I am recording myself and convinced I am slurring. I find certain phrases difficult and then i panic and repeat and repeat the same phrase to analyse my speech. Also my mouth has started to feel tired when I eat (this one is actually a new symptom to me. But I must remind myself it came on AFTER I started worrying about als). Swallowing also feels awkward and all wrong.
If you concentrate on the mechanics of swallowing it will feel all wrong. I used to concentrate on the mechanics of breathing and ended up in A&E..It's still a "weak point" of mine but I challenge it with a "what the hell does it matter?" mental shrug. True dysphagia is a different kettle of fish but you know this..Just as you know where repetitive self-testing will lead you...
Words on a screen won't convince you to stop self-testing, I know. Perceived slurring/perceived swallowing difficulties/perceived anything is all just...perceived and not clinically diagnosed. You will want to add a "yet" to that though? What would it take for you not to want to add a "yet" ..What stops you from going back to the neuro now? xxx
Thank you Pulisa my friend. Actually your words on a screen do help very very much. Sometimes it’s almost like I have split personality- the rational me and the terrified catastrophist me. And when OCD and an anxiety disorder are thrown into the mix, the rational me doesn’t stand much of a chance…… but you guys give this part of me much needed back up! I am so grateful xxxx
The rational you is still standing and recognising the catastrophist you though. Self awareness is a powerful tool to possess xx
Thank you Pulisa my friend. Actually your words on a screen do help very very much. Sometimes it’s almost like I have split personality- the rational me and the terrified catastrophist me. And when OCD and an anxiety disorder are thrown into the mix, the rational me doesn’t stand much of a chance…… but you guys give this part of me much needed back up! I am so grateful xxxx
And I think the rational you stands more of a chance than you think but you HAVE to curb the self-testing..because this will just replant those HA seeds in your brain which the rational you will challenge xx
And I think the rational you stands more of a chance than you think but you HAVE to curb the self-testing..because this will just replant those HA seeds in your brain which the rational you will challenge xx
This is so true. I do seem to be a sufferer of OCD - like the hair pulling thingamy- and I do believe HA checking is also in the OCD stable. It is incredibly hard to resist.
Like you have in the past Pulisa, I also wonder how connected this is to autism. I have never been assessed personally and would probably not reach diagnostic criteria- but when I sat in on an ASD assessment, many things that were said chimed with me. Like, for example, people with Asd often find lack of certainty intolerable. And I think that is something - along with having an obsessive personality- that underpins my HA…..
I don’t know:….
My son gets enraged about lack of certainty. He simply can't bear it whereas my daughter gets really anxious and fearful.
It's such a complex business, isn't it? Severe distress is just unbearable though, regardless of diagnosis. Do you find it helpful to "unpick" the driving force behind your HA? I would have said it was more OCD-related due to the distress it causes?
My son gets enraged about lack of certainty. He simply can't bear it whereas my daughter gets really anxious and fearful.
It's such a complex business, isn't it? Severe distress is just unbearable though, regardless of diagnosis. Do you find it helpful to "unpick" the driving force behind your HA? I would have said it was more OCD-related due to the distress it causes?
Im not sure it’s helpful….. like you say, distress is distress, no matter the cause. But I suppose it allows me to have a bit of an “outsiders” view of myself….. which is interesting if nothing else… Not that it will actually solve anything. But, as I tell others, the distressing times will keep coming, but they will also keep passing.
We both have a lot of complex issues going on in our lives and it's not surprising that the cracks show in terms of how anxiety manifests itself.
I'm a fine one to offer advice but I hate to think of you being so tormented, jojo and I hope that you will be able to move away from the urge to self-check which just adds to the misery...as you know. What has helped you in the past to put the breaks on? xxx
We both have a lot of complex issues going on in our lives and it's not surprising that the cracks show in terms of how anxiety manifests itself.
I'm a fine one to offer advice but I hate to think of you being so tormented, jojo and I hope that you will be able to move away from the urge to self-check which just adds to the misery...as you know. What has helped you in the past to put the breaks on? xxx
I replied to this yesterday but for some reason it didn’t post. It means so much that you care in spite of your own problems. Thank you my friend.
im not sure how to stop checking. I spoke to my doctor yesterday, who kindly refused to refer me to a neurologist but said she is concerned about my mental health. She couldn’t hear me slurring. And tried to give advice to stop the checking behaviour. But it’s so hard (slash impossible!) right now. This morning, for example I was sucking my finger and I noticed I had a weak suck (I am in the middle of major dental work and currently missing three teeth awaiting implants. A possible explanation?). But this observation had such a physical reaction. I felt immediately sick, I started sweating and shaking. And I would do literally anything to stop the feeling, because it’s agony. But….. eventually…… time will fix this (unless it actually IS MMD this time!!). I am so lucky to have supportive people around me. Including you xxx
I'm glad your doctor refused to refer you and couldn't hear your perceived slurring. Please don't make a private appointment?
I don't want to comment on your "weak" suck other than to state the obvious ie self-testing brings misery. Every time you self-test you add to your distress. It never reassures you. It just throws up more perceived anomalies.
What COULD you do to stop the cycle? What about the diazepam you had mentioned in a previous post? It can be very helpful xxx
I'm glad your doctor refused to refer you and couldn't hear your perceived slurring. Please don't make a private appointment?
I don't want to comment on your "weak" suck other than to state the obvious ie self-testing brings misery. Every time you self-test you add to your distress. It never reassures you. It just throws up more perceived anomalies.
What COULD you do to stop the cycle? What about the diazepam you had mentioned in a previous post? It can be very helpful xxx
So I was discussing diazepam with my doctor yesterday- and she does recommend it - but I felt worried it would produce MORE perceived symptoms for me to vex over! It might come to that though….. anything to dull the distress!
The inside of my mouth is covered in bright red suction bruises from testing my weak suck. I’m supposed to be seeing the dentist on Monday and I’m sure he will think it’s from some dodgy sexual activity!! It would be funny if it wasn’t so tragic…..!!! ;-) xxx
Your "perceived" weak suck...It's self harm, jojo.
The diazepam will take the edge off your agitation. I recommend it too. It could give you some relief from the torment xxx
I am really struggling at the moment. Sometimes the fear feels so bad it is almost unbearable. I am trying to control my obsessive self testing, but the compulsion to do it is so incredibly strong and, just sometimes, it brings me a little bit of relief. I’ve done enough CBT to know this is the trap with self testing. Sometimes it seems to help, which feeds the compulsion…. But more often than not it feeds the anxiety, causing the vicious cycle to strengthen. Just for the record (for my future self reading back over this) my current self test is for a nasal voice (how did I avoid this particular google rabbit Warren before?!?). Naturally I think I have it. And naturally I am interpreting this as a positive test for ALS.
But mainly I also feel tired. This particular acute HA crisis has been going on for three months now (looking at this thread) - and I just wish the “fever” would break. Thank you so much, as always, for listening x
You feel exhausted due to 3 months of acute and relentless HA. The exhaustion stops you being strong enough to challenge your ALS fears hence you will jump from symptom to symptom thanks to your research and regime of self testing.
What about diazepam as a "fever" breaker? What sort of relief do you get from the self testing and how do you rationalise this in your head? xx
Just want to tell you I’m going through the exact same thing including the swallowing which is driving me mad. It’s been going on about 3 weeks now (I came off sertraline 2/3 months ago). Had also felt at times I’ve almost tripped, like I can’t speak/mix words up a lot, difficulty concentrating - I even panic when I am driving forgetting where my feet go when im really bad, it’s like I have to look down to check my feet are on the right pedals.
It’s so exhausting: I have thought about every swallow of food I’ve taken for 3 weeks now and fear im never going to stop thinking about it. When I think about food my stomach drops with fear and I tense up. Im so scared of choking on my food which is a symptom that started when I started taking sertraline (and I had it on citalopram many years ago too), so I know it’s related to that or anxiety, and the anxiousness has led too all of these other symptoms. I have been forcing myself to eat but have no appetite and I’ve lost over half a stone in a few weeks. My stomach is constantly in an anxious knot.
I honestly feel like I am having some sort of psychotic break over this, but I had the same worry 3 years ago which is what put me on sertraline in the first place - it did help and I know I can restart meds at any time but just reluctant to at the moment. Like you, I remembered looking back at some of the worries I had and realising how ridiculous they sounded later :(
I’m in bed at the moment, tired after getting my second vaccine earlier and just feeling very surreal and afraid of talking and eating in case it doesn’t happen right. It’s such a scary place but just want to let you know you’re not alone.
Hang in there xx
I do very much empathise with you both. I have no intention of ever getting myself back in that grim, isolating mindset again. Things you take for granted become awkward and "not right" because you are thinking about what normally comes automatically when you are well mentally.
Thank you both so much for replying. Pulisa your words are always so true. And seeing them always helps me (I know it must seem like you are speaking to a brick wall at the moment- but I promise you….. the rational me is still in here - if teeny tiny atm - and I’m listening.)
The HA monster tells me that the self tests will act as reassurance. It tells me that if I test my voice for nasality and find it “normal” I will feel better. But my perception is such that, nearly always, my “tests” reveal a problem. Which causes panic and the need for a flurry of repeat tests or a doctor consultation. And even if they don’t reveal a “problem”, the sense of relief I get lasts the shortest time, before I start to doubt the “results” and need to test again. It’s such a well documented cycle. And one I both understand and am utterly beholden to!! Next time I speak to my doctor I will say yes to the diazepam. I did hope the sertraline would have kicked in by now but when the vicious cycle gains strength it has a powerful life of its own!
And STK149 I am truly sorry you are struggling too. I hope you escape before it grips you too tightly. Why did you come off the sertraline? Interestingly that was the trigger for this HA crisis for me too….. and I know just what you mean about not wanting to speak or eat. I feel exactly the same. I don’t even want to read to my children at the moment, which is just so sad. Hope you feel ok after your vaccine. I had mine last week and felt a bit rough x
I think meds help to a certain extent but all the meds in the world won't successfully manage HA without you having the strength,determination and belief to challenge the thoughts creeping in which keep you in that destructive cycle. Ultimately it's "you" not the meds who holds the key to some degree of liberation...but again you know this of course.
Have you found any of the info on sensorimotor OCD helpful?
I didn’t know about sensorimotor ocd before I looked at STk’s thread. Looks extremely interesting and I’m going to do some reading about it. Xx
I find this extremely sad at this point. Its apparent to everyone but yourself how irrational your fear is. I can only hope you seek the real life help you so desperately need at this point :weep:
Positive thoughts
Thank you for the reply FMP. The irrationality is apparent to me too - sort of at least - but the terror is the thing that is real. This thread is several years old. And so it probably looks like I have been locked in this horrible hole that entire time. In fact i have had - sometimes long - periods of remission. But this relapse is a bad one, and has now been going on for three months. I know I need help. And I know I need to do more to help myself - to combat my self testing, and my damaging thought patterns. But it’s the summer holidays at the moment and I have four children at home….. so actual therapy is off the cards right now because i am very much “on duty” and I don’t want to reveal too much of this problem to them because it would be highly unsettling (I have talked about it to my eldest. Partly because I do think it’s important to be candid about mental health. But she doesn’t SEE it on a day to day basis. And I’d rather keep it that way).
But - that said - coming on here IS the best kind of therapy for me. On here I can voice my fears. Get the faulty thoughts pointed out, and get support. So i remain forever grateful. Xx
I didn’t know about sensorimotor ocd before I looked at STk’s thread. Looks extremely interesting and I’m going to do some reading about it. Xx
It's something which I recognise in myself. There's such a horrible spectrum of stuff you can torment yourself with..I really hope you find some useful information/sources of support xxx
Thank you for the reply FMP. The irrationality is apparent to me too - sort of at least - but the terror is the thing that is real. This thread is several years old. And so it probably looks like I have been locked in this horrible hole that entire time. In fact i have had - sometimes long - periods of remission. But this relapse is a bad one, and has now been going on for three months. I know I need help. And I know I need to do more to help myself - to combat my self testing, and my damaging thought patterns. But it’s the summer holidays at the moment and I have four children at home….. so actual therapy is off the cards right now because i am very much “on duty” and I don’t want to reveal too much of this problem to them because it would be highly unsettling (I have talked about it to my eldest. Partly because I do think it’s important to be candid about mental health. But she doesn’t SEE it on a day to day basis. And I’d rather keep it that way).
But - that said - coming on here IS the best kind of therapy for me. On here I can voice my fears. Get the faulty thoughts pointed out, and get support. So i remain forever grateful. Xx
It's incredibly hard to manage such a distressing condition when you have 4 young children to entertain on a daily basis. What IS "help" though? Professional therapy undoubtedly but it can't just be conjured up instantly and when juggling the demands of childcare and holiday activities and it has to be with the right person who has a specialised understanding and interest in HA and its challenges.
You do what is best for you, Jojo. You have a very challenging life and if coming on here helps then let us help you if we can? xxx
It's incredibly hard to manage such a distressing condition when you have 4 young children to entertain on a daily basis. What IS "help" though? Professional therapy undoubtedly but it can't just be conjured up instantly and when juggling the demands of childcare and holiday activities and it has to be with the right person who has a specialised understanding and interest in HA and its challenges.
You do what is best for you, Jojo. You have a very challenging life and if coming on here helps then let us help you if we can? xxx
Thank you dearest Pulisa - I do and will! And it really is INCREDIBLY helpful. When I have had professional therapy in the past….. I have sung the praises of NMP as the most valuable source of peer support - and it’s there when you need it most, in your darkest moments. The internet may have contributed to my problem (bloody dr google!!) but it also provides much needed support. Xxx
Hi Jojo,
Thanks for your kind words. Definitely look in to sensorimotor OCD and if you can, find a good therapist to treat it. It’s all about desensitising yourself to the fear of ALS and your anxiety symptoms until they have less of a hold on you and resisting reassurance seeking - so much easier said than done! I am starting with my new therapist tomorrow night and hoping the session is productive. I can’t imagine how hard it is with kids - I am single and live at home with my mum and she’s been really supportive but I feel so guilty for causing her to worry about me.
As for coming off sertraline: I just felt like it maybe created a few more additional issues for me while I was on it (developing new fears, bad brain fog etc) and just felt like I didn’t need it anymore as the original fear had went away (which was also ALS related at the time LOL) now I just feel like I’m back to square one. How long ago did you come off it? I joined a forum called Surviving Antidepressants and apparently it’s a very common pattern to experience an intense wave of anxiety 2-4 months after stopping.
X
Oh my goodness Stk- that is so interesting. I had felt quite “level” for a while, which is why I decided to wean myself off sertraline. It seemed to be going really well and about 2 months passed and I thought I was out of the woods and then BAM! This wall of anxiety hit me like a freight train. I had no idea this was a thing.
How is your swallowing going? I totally relate to this being an obsession- I’ve had this too
No way! It definitely seems to be a pattern for a lot of people. Are you considering going back on them? I'm not sure what to do, every time I've taken ADs I have relapsed 2-3 months after coming off of them, only once have I been able to stick it out and wait for the dread to pass but it's so difficult. I hate that you're suffering too but it's also quite reassuring to know I'm not the only one that's followed this pattern.
I am still constantly thinking about my swallowing and it's going on 3/4 weeks now, of course the vicious cycle of anxiety now has left me with no appetite and dry mouth which is making it even more difficult. I normally love my food so this just feels so alien to me! Hoping I can get some proper advice from the therapist tomorrow night rather than trying to figure it all out on my own. The most confusing thing for me is that this OCD has stemmed from an anxiety symptom, so I'm stuck trying to figure out if I should treat it as anxiety or treat it as OCD! So frustrating.
arent anxiety and ocd two sides of the same coin though? Can’t they be treated in tandem? The most weight I’ve ever lost has been when I am having swallowing phobia. And I love food too! For me at the moment though I’m more concerned about my voice- so I’m not talking much…… which doesn’t have quite the same effect!
I am back on sertraline - I caved. But, so far, it’s not helping. But…… early days I guess. I might handle it differently next time I come off it though….. now I know about the 2 month wall!
Well they can (I think!) but it’s important to make a difference between treating the two. I have found reassurance and distraction helpful for anxiety and panic, but with OCD it is more about allowing the fear to be present in order to desensitise (so not using distraction or thought blocking or reassurance).
Did you find anything in particular helped with the swallowing thing? Because i literally feel like my brain is going to be stuck on it forever :(
And no shame on going back on sertraline if it works! I may end up doing the same myself if this doesn’t get better for me but just hope it helps. I think if you do try to come off them again do it very very slowly, the advice my doctor gave me was shocking in that they told me to take 1 every other day for a week and then stop: far too quick after 3 years of treatment!
I am really struggling today. My twitching is pretty bad and last night I lay in the bath crying, while my thigh muscles jumped about all on their own. I know! I’ve been in and out of this hole for four years! So I’m NOT going to ask any of you lovely people to reassure me. You’ve done it already. And heads and walls come to mind!!
So I am going to answer my own post by pasting a great post I found on the BFS forum. It describes pretty much exactly what my neurologist said to me (2 years ago!). If it helps others then that would be wonderful. Lots of love to you all xxx
”Hi everybody,
Got back from the neurologist. First things first. His words, and the most important ones: this is NO ALS.
(I’m going to try to give as much information as he told me but I’m Dutch so hopefully my english is good enough)
The neurologist has been a professor in motor neuron diseases for more than 40 years, so he must know what he’s talking about. He looks a little like Santa Claus, so he must be very good and smart.
Usually an assistant neurologist does the clinical but this time I saw the professor right away. He didn’t see the use of doing another clinical because I had already been diagnosed with BFS.
I gave him a list with all my symptoms (fascics under feet, fascics 24/7 calves and thights, knees, shoulders, hands, back, cheecks. Tickling feelings on hands, shoulders, cheecks, strange feeling in cheeck, crampy hands, vibrating tongue, cramps in cheecks, cramps in legs, arms, vibrations all over, tremor and so on…) He read them and said: “If I read them one by one I don’t find anything that worries me, if I put them all togheter it brings me to BFS and anxiety.�
I explained my fear for bulbar als so he did a clinical in my mouth, tongue and neck. All fine he said. Of course I asked him about tongue fasciculations. He said that’s not the kind he’s looking for. With ALS they look at something else in the tongue, he explained me what they look for. (not going to explain that because otherwise you all end up in front of the mirror and you don’t have als so no reason to explain it). He said the tongue is the most active muscle and the one that’s almost impossible to keep still. So regarding to shaking tongues: no worry = natural.
I also showed him my arm because I thougt there was atrophy. He laughed. “This is no atrophy at all�
So now everything I asked, he replied and said:
1)Where, when and how the fasciculations appear: “doesn’t matter, not important�
2)What about little ones, fine ones. I heard they are more due to ALS: “Huhm, you know more than me, no, that’s nonsense.�
3) Widespread twitches and bulbar diagnosed: “Here you need to use your common sense, if you are twitching all over and it’s due to ALS than a) you would have had clinical issues b) you are at a stage when it would be very clear there is something wrong c) EMG already pointed out d) you wouldn’t be able to speak normally anymore�
4) Does bulbar ALS appear with weird shakes, something in throat, biting on tongue? “Not at all, it’s diffuculties swallowing and speaking. Not saying words wrong but not being able to, as if you were drunk (very early stage) Also bulbar is the quickest one and you will know this immediately. It doesn’t hide, at your stage (7 months) you wouldn’t be able to say anything anymore�
5) I read 6% of ALS come with fascics first, is there a time limit to be sure? “In my 40 years of expierence I have never seen a ALS patients with only fascics as an only symptom� It’s true some people come here with fascics and that’s the only thing they complain about but when we do a clinical we notice that there are other things wrong with them�
6) Do you see clinical abnormalities in every clinical in every stage of ALS? “Yes�
7) Does clean EMG really rule out ALS? “ We don’t need a EMG to RULE out ALS, we need it to CONFIRM ALS. If there is something wrong we definitely see it in the clinical.
8 ) How come in some EMG’s they see fascics and in some not? (this is a technical explanation of the prof and very diffucult for me to say in English but I’l try) “ The EMG is like a kind of eye, and also as big as an eye. So if they put it in one muscle in only sees that part of the muscle (as big as an eye) If you are not twitching there at that moment they won’t see it although you are twitching in different areas. If you happen to twitch there at that moment they see it. With ALS it’s different. The muscle doens’t get impulses of the nerve anymore or badly and shouts outs to the other muscles to reinforce. So they give a little of their strength to it, result: continous twitching, fibs, sharp waves,…
9) I heard a lot about the CK level, why haven’t they tested that with me? “Not necessary, that we do for muscle diseases, ALS is actually a nerve disease. We only do this if we suspect a muscle disease. And we do not suspect anything with you.
10) What about the my high reflexes? “ You can have high or brisk reflexes if you are nerveous, certain body type. We look for abnormalities in the reflexes.�
11) I read stories on the internet ( we all know certain stories, not going to tell them here again) “ Well, listen, that’s the internet
* It’s not a controlable source/place
* You don’t know if it’s true or not
* Facts are never given cleary
* I it’s in fact an als patient, it’s mostly a cry for help
* Some say I've been twitching for 10 months and now I get ALS, there would be signs if this person had had a clinical
12) Do you ever have patients going from BFS to ALS? “In 40 years – never “
13) Is ALS really that rare? 1/100 0000 What about young people? Well there are indeed cases of young people, but rare. The only connection we might see with young als patients is that they, in many cases, are very intensive sportspeople. We think that they would get ALS eventually but that they have accelerated it. But I mean real sportspeople not going to the gym or have a run, sport is good for you�
14) Do you see a lot of people with BFS? “Every week, listen, go on the street and ask 100 people if they have twitches, I wouldn’t like to feed them. Most people don’t even know they have them, some just feel something but think, okay that’s part of my body. Most people we see here with BFS are medical people who link this to ALS and of course the ‘googlers’(that's us ).
Other things he said-
-At some point you just have to believe this is not ALS, we are specialists trained for recognizing this disease, we don’t not easily miss something. As a matter of fact we have 600 ALS patients followed up here.
-If all that has been said over the internet would be true, I would not have a job!
-I can give you a book about neurology, if you read it, I’m certain that you will be here next week again thinking you got 1000 diseases.
-Twitching is mostly always benign.
-I’m concerned about this. I know you can become 100 years with this BFS but I’m afraid for the mental part. You have and try the quit your anxiety, the brain is so powerful.
His advices
- Stop searching the internet, you will always find the things you don’t want to know or aren't true
- Stop exhausting your body: stop running every stair, pick up everything, lift weights all the time. If you just go to the gym to work on your body and health it’s ok, but if this als fear is in the back of your mind during excersise you will exhaust your body even more and twitching will increase. Because you are doing things that you are not used too + your mind is being involved. Result: more twitching, more pain, more cramping,… If you would have ALS you would notice it in the little things like turning keys, grabbing things, getting up from a chair.
- If you worry about the twitches go to your GP get a note for the neurologist . Let them do a clinical. If you are ok trust him/her. Still not convinced, get a second opinion, but after that: stop! Life and enjoy.
- We cannot say never ever, so as I can’t say that you won’t mutate in an alien in 5 minutes either.
- With 99.9% we don’t mean that there is actually 0,1% that will get something, no this is wrongfully understood. Like I mentioned before, we have no garuantees in life, for nothing, that’s way 99,9%. We can’t give you a 100% that you won’t drop dead in 10 minutes. That’s all.
- Trust your neurologist, he’s the one that studied for this, he’s the one following ALS patients, we are not, you don’t know what we look for. Don't diagnosed yourself.
- For diagnosed ALS we don’t look for twitches but for weakness and atrophy, real weakness that doesn’t stop but only get worse.
- I know, he said, this twitching and all the things are bothering you but the only way to reduce them is REALLY accept it that there is nothing wrong with you, as long as you have the slightest doubt about it your mind will maintain this symptoms are even make them bigger.
Maybe there was more information but most things have been said here hundres of times. I’m now going to try and beat this fear and leave it behind me. I’m going to try not to visit the forum as often, but everyone can always PM me.
There is just one last thing to say: I want to thank everybody that supported me, people that PM 'ed me, that prayed for me, that listened too me. Thank you Deedee, Sandra, Sean, Mark, Denise, CDC, DD, Slavin Balen, Swedish Girl, Edado, Cindy, Wamjr1002 and many more. You are good people, love you all and God bless you.”
Does it help YOU though,Jojo? xx
Jojo this is wonderful news! I am so very happy for you! Thank you as well for asking so many well thought out questions and posting your answers here, you’re amazing! I hope you can put all this behind you and go on with a long and happy life! Much love ❤️
Jojo this is wonderful news! I am so very happy for you! Thank you as well for asking so many well thought out questions and posting your answers here, you’re amazing! I hope you can put all this behind you and go on with a long and happy life! Much love ❤️
No - sorry that’s not my post! I found it on a BFS forum and I copied it here….. because I liked it! But this person’s neurologist did say very similar things to the one I saw two years ago. It makes me happy to see they are reading from the same song sheet! Hope you are ok? I’ve been a twitching anxious MESS recently!!
JoJo sending huge hugs. One day at a time.:hugs:
Here I am again with an update for my silly little blog. I’m not looking for reassurance- I know the score- and I’ve been in this hole too long to deserve it. It’s just I find it good therapy to keep a record when I hit a bad patch (and I do have periods of being ok, I promise!)
Anyway. Here goes. I’ve been twitching for years, (and worrying about als for years!!), but recently I’ve had a twitching hot spot just below my elbow on my left arm. This caused me to examine myself for atrophy and I discovered my left arm is about half an inch smaller below the elbow. This caused an immediate spiral and a flurry of strength testing. And low and behold my left wrist is much weaker. Yesterday I could’nt hold it straight for longer than 16 seconds holding a 6kg weight. This morning I can’t hold it straight with a 6kg weight AT ALL (which is presumably because I’ve been brutalising my poor body again). My grip strength has also fallen off a cliff. Yet again, I’m crying down this damned stupid hole.
Silly me xxxx
FWIW, I don't think I could have ever held a 6kg weight at the end of an extended wrist, ever. I do have very tiny wrists, though (all those online 'frame size' calculators estimate I'm about 12 years old :doh:) And! I too get the elbow hotspots (above, not below, but same idea.) Last, you know this, but want to say it for the peanut gallery: Clinical weakness isn't the same as normal old muscle fatigue! Clinical weakness is more like staring at a muscle that just won't move, or tripping on toes that fold under you or a forefoot that won't lift, or having stuff fall right out of your hand. You held that weight. That alone practically eliminates what you're worried over! Sending much love.
Is there any way you can stop yourself from self-testing mode? Any way you can hold back from that very first attempt to justify your fears? How do you know what self-test you need to do?
Thank you so much for the replies, both.
I know that self-testing is nearly always a silly thing to do. I am a drug addict giving in to another hit.
My left arm seems to be stronger now (due to relentless strength testing) . But the real problem- anxiety - sadly remains.
xxx
You have always been incredibly honest about your HA, jojo. You never make excuses for what you put yourself through. Why do we need to punish ourselves? I suppose if we knew we could work on it.
Maybe it's just something we need to do? xx
I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx
I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx
Yes... I think "insight" is much welcomed by docs because it lets them off the hook.
I've never heard of a nut job with insight!:DYou're just very thorough with your health issues! xxx
I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx
Oh my goodness, Jojo, I could have written this sentence myself. I sound so reasonable in print or via words but the inside of my head is significantly less rosy!
Someone I knew who was brilliant but had all sorts of issues used to put it like this: "If your best friend had all these exact problems and concerns, what advice would you give them?"
I like to think NMP (and the likes of Pulisa, BlueIris, others who I know I am rudely forgetting...) is here for that. But good grief it's hard to take one's own advice at times! Hugs.
So a little update. I am now nearly 10 months into this flare up. And am still struggling every day. I think this is the longest unremitting bout of HA (and specifically ALS HA) I’ve had. I’m hyper hyper aware of things that should happen unconsciously. Chewing and swallowing feel all “wrong”. My tongue feels like it gets in the way. I worry that my voice is slurred or hoarse or nasal. I read through my entire thread last night and could see how I return to the same worries again and again.
Anyway. I spoke to my doctor again yesterday, who is going to refer me to a psychiatrist (not a neurologist as I would like!!!), and she has increased my dose of sertraline to 150mg. I really didn’t want to go that high. But right now I’d take anything not to be feeling like this!
Sending love and good wishes. You know you're stronger than this, and I'm around to talk any time you want.
You are the best BI. Right now HA is winning the battle. But the war is a long one. I’m long overdue a turn of having the upper hand!! Hope you are ok love?
I am. Tired and a bit frazzled but still me. You're a wonderful person and you can make it through this.
Jojo,you will probably get a far better response on the highest dose of sertraline if you are going to see some improvement on this med so don't be worried about the dosage level. My daughter was on 200mg daily in her teens. I think you will get far better care seeing a psychiatrist at this stage after such a prolonged bout of unremitting HA. It's all sensorimotor stuff now as you realise but it's very challenging to manage unless you mentally tell these fears to do their worse and relinquish your need to control what normally comes naturally xxx
Hello,
I'm currently in the midst of a flare up myself but what I will say is that hyperfocusing on your swallowing and speech can definitely send you into a spiral.
I went through this exact same issue years ago when I had a limb EMG that was all clear. What did I do? I googled and read about bulbar ALS. What happened next? I became convinced I couldn't swallow. I lost 30 lbs. because I was afraid to try and eat. Worried I would choke and confirm in my mind that I had ALS. It got so bad that there were times where I literally had trouble initiating a swallow because I overanalyzed every single swallow. My throat would seize up from the tension and hyperfocus. Guess what? That was 6 years ago and all that weight is back and then some lol.
Me telling you this is to let you know that there is a path forward. Wake up every day and fight the anxiety. Speaking with a psychiatrist is a good idea IMO. I've recently started to do yoga to help with all my twitching, tension, tightness. Try anything which can reduce your stress. Throw everything at it. Hopefully, something will give you some peace.
Most importantly: You are not alone and you can overcome this in time.
Hello,
I'm currently in the midst of a flare up myself but what I will say is that hyperfocusing on your swallowing and speech can definitely send you into a spiral.
I went through this exact same issue years ago when I had a limb EMG that was all clear. What did I do? I googled and read about bulbar ALS. What happened next? I became convinced I couldn't swallow. I lost 30 lbs. because I was afraid to try and eat. Worried I would choke and confirm in my mind that I had ALS. It got so bad that there were times where I literally had trouble initiating a swallow because I overanalyzed every single swallow. My throat would seize up from the tension and hyperfocus. Guess what? That was 6 years ago and all that weight is back and then some lol.
Me telling you this is to let you know that there is a path forward. Wake up every day and fight the anxiety. Speaking with a psychiatrist is a good idea IMO. I've recently started to do yoga to help with all my twitching, tension, tightness. Try anything which can reduce your stress. Throw everything at it. Hopefully, something will give you some peace.
Most importantly: You are not alone and you can overcome this in time.
Exactly yes! I have become afraid to eat or drink in case my swallow malfunctions and triggers a panic! And the most absurd thing of all is….. I too went through this exact same thing some years ago. Sorry to hear you are struggling lately. Have you been posting about it? I will look out your thread….
Jojo,you will probably get a far better response on the highest dose of sertraline if you are going to see some improvement on this med so don't be worried about the dosage level. My daughter was on 200mg daily in her teens. I think you will get far better care seeing a psychiatrist at this stage after such a prolonged bout of unremitting HA. It's all sensorimotor stuff now as you realise but it's very challenging to manage unless you mentally tell these fears to do their worse and relinquish your need to control what normally comes naturally xxx
Its very good to hear about your daughter’s experiences…. Thank you Pulisa
I don’t know why i fear a larger dose. I suppose it just feels like I have a longer road back to being “drug free”. But as my dr assures me… these things are safe for long term use so… xxxx
Its very good to hear about your daughter’s experiences…. Thank you Pulisa
I don’t know why i fear a larger dose. I suppose it just feels like I have a longer road back to being “drug free”. But as my dr assures me… these things are safe for long term use so… xxxx
But if you were able to "tame" your HA on a higher dose of sertraline ,would you still feel the same way? Along with therapy of course. Would it matter taking higher dose meds if they actually helped you? It's quality of life after all and you can't have much of that at the moment?
Jojo, I haven’t read through the whole thread but one of your recent posts reminded me of myself - I went three YEARS where I couldn’t eat with cutlery in front of people because my hand would shake. So like soups, pasta, etc were out of the question - I had to stick to finger foods. I was so afraid something was wrong with me, but I don’t know what. I was fine when alone; it was only in front of others. I started meds and they helped a ton. I still can’t believe that it lasted so long and was ultimately just my own mind playing tricks on me.
I hope the meds kick in and you can find some relief. HA is a terrible beast.
Jojo, I haven’t read through the whole thread but one of your recent posts reminded me of myself - I went three YEARS where I couldn’t eat with cutlery in front of people because my hand would shake. So like soups, pasta, etc were out of the question - I had to stick to finger foods. I was so afraid something was wrong with me, but I don’t know what. I was fine when alone; it was only in front of others. I started meds and they helped a ton. I still can’t believe that it lasted so long and was ultimately just my own mind playing tricks on me.
I hope the meds kick in and you can find some relief. HA is a terrible beast.
Thank you so much for the reply and sharing that with me Poppy. HA is indeed a terrible, powerful beast. And I am constantly blown away by the symptoms the mind can produce. And yet…. I always always fall for it!
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