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jojo2316
25-05-17, 10:36
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????

swajj
25-05-17, 10:59
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.

jojo2316
25-05-17, 11:08
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 ��

swajj
25-05-17, 11:20
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.

Fishmanpa
25-05-17, 12:16
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

jojo2316
25-05-17, 13:16
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!!!!

Fishmanpa
25-05-17, 13:26
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

jojo2316
25-05-17, 13:45
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

NancyW
25-05-17, 13:59
health anxiety is incredibly powerful.

As my beloved mom always said "it's the devil".

Josh1234
25-05-17, 14:36
"Spinal onset ALS"

Huh?

jojo2316
25-05-17, 15:11
"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

jojo2316
22-11-17, 11:38
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

Fishmanpa
22-11-17, 13:05
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

emmegee
22-11-17, 14:08
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.

jojo2316
22-11-17, 14:32
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

emmegee
22-11-17, 15:45
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:

melfish
22-11-17, 18:00
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.

jojo2316
22-11-17, 18:29
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

melfish
22-11-17, 18:41
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 ...

jojo2316
22-11-17, 19:46
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

melfish
22-11-17, 20:06
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

MoleHill
23-11-17, 05:29
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.

nivekc251
23-11-17, 06:31
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.

melfish
23-11-17, 06:56
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:

jojo2316
23-11-17, 07:37
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?!

jojo2316
23-11-17, 16:34
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

melfish
23-11-17, 18:33
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.

jojo2316
23-11-17, 18:45
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!

melfish
23-11-17, 19:01
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

jojo2316
23-11-17, 19:02
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

melfish
23-11-17, 19:10
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:

jojo2316
23-11-17, 20:00
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

melfish
23-11-17, 20:07
I hear you. I only look at incidental photos/videos of tongues. I don't wanna see no ALS tongues, lol

Lilly13
27-04-18, 02:09
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.)

jojo2316
07-12-18, 07:23
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

pulisa
07-12-18, 09:55
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

jojo2316
07-12-18, 10:01
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:

BlueIris
07-12-18, 10:28
Take a deep breath, Jojo, and think of all the fun stuff you could be spending that money on instead.

jojo2316
10-12-18, 23:42
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

Fishmanpa
11-12-18, 01:53
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

jojo2316
11-12-18, 06:04
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

Fishmanpa
11-12-18, 07:41
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

jojo2316
11-12-18, 08:34
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

pulisa
11-12-18, 09:58
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

jojo2316
11-12-18, 10:56
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

BlueIris
11-12-18, 11:17
Hang in there, okay? I know how hard it is and I'm thinking of you.

jojo2316
11-12-18, 11:26
Thank you all. This site is such a lifeline - there are some true life angels on here.
Xxx

pulisa
11-12-18, 14:19
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

jojo2316
11-12-18, 16:24
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

pulisa
11-12-18, 18:33
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
-

jojo2316
11-12-18, 20:01
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!!!!)

pulisa
11-12-18, 22:19
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?

jojo2316
12-12-18, 07:48
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

BlueIris
12-12-18, 09:03
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.

pulisa
12-12-18, 09:14
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

BlueIris
12-12-18, 09:25
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.

pulisa
12-12-18, 09:35
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.

jojo2316
12-12-18, 09:41
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.

pulisa
12-12-18, 09:52
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.

BlueIris
12-12-18, 10:01
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.

pulisa
12-12-18, 10:04
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!

jojo2316
12-12-18, 10:21
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?

---------- Post added at 09:21 ---------- Previous post was at 09:19 ----------


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
-

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

BlueIris
12-12-18, 10:32
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.

jojo2316
12-12-18, 10:35
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!!

BlueIris
12-12-18, 11:03
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 ;)

pulisa
12-12-18, 12:44
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

jojo2316
12-12-18, 13:46
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!

pulisa
12-12-18, 14:01
That's incredible and a good indicator for a long and healthy life for you, jojo!

jojo2316
12-12-18, 14:10
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)

pulisa
13-12-18, 22:25
One commandment for tomorrow...

"Thou Shalt Not Ring The Neurologist"...

jojo2316
13-12-18, 22:47
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”

pulisa
14-12-18, 09:29
"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)

BlueIris
14-12-18, 09:56
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.

jojo2316
14-12-18, 23:14
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.

BlueIris
15-12-18, 07:24
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!

jojo2316
15-12-18, 08:25
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

BlueIris
15-12-18, 08:43
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.

jojo2316
15-12-18, 08:54
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!

pulisa
15-12-18, 09:10
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)

jojo2316
15-12-18, 10:26
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...,.,

pulisa
15-12-18, 14:32
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

Josh1234
15-12-18, 17:28
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.

jojo2316
15-12-18, 17:43
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

---------- Post added at 16:43 ---------- Previous post was at 16:42 ----------


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!!)

pulisa
15-12-18, 18:46
What do you think your GP would say if you were able to see her?

jojo2316
15-12-18, 21:33
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....

pulisa
15-12-18, 21:40
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.

jojo2316
15-12-18, 21:55
So how does your gp distinguish between anxiety and real illness?

pulisa
15-12-18, 22:01
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.

BlueIris
15-12-18, 22:02
She sounds pretty great - glad you have somebody like that on your side!

jojo2316
15-12-18, 22:11
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:

pulisa
15-12-18, 22:20
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!

jojo2316
15-12-18, 22:41
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

pulisa
16-12-18, 09:22
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.

jojo2316
21-12-18, 12:56
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

Aussie11
21-12-18, 13:07
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!

jojo2316
21-12-18, 13:28
Here is the picture. Sorry - horrible feet!

https://www.nomorepanic.co.uk/attachment.php?attachmentid=4377&stc=1&d=1545395243

Fishmanpa
21-12-18, 13:57
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

pulisa
21-12-18, 14:18
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, 14:26
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

jojo2316
21-12-18, 14:49
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!!!)

pulisa
21-12-18, 14:52
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?

jojo2316
21-12-18, 15:16
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....

---------- Post added at 14:16 ---------- Previous post was at 13:53 ----------


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:

pulisa
21-12-18, 18:44
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

jojo2316
21-12-18, 19:12
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

jojo2316
27-12-18, 22:04
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

pulisa
28-12-18, 09:33
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

jojo2316
28-10-19, 09:52
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

Crystal76
04-11-19, 21:44
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 .