View Full Version : My ALS fears
Hi everyone. I've really been having a tough time with fears about having ALS, it's something I think about pretty much every minute of every day. Or close to it.
Several weeks ago I started having this fatigue feeling on my right side, right leg and right wrist/hand. It's not always there, but it's there a lot. My right hand just feels tired and little slower. My right leg feels fatigued. I won't say it's weakness because so far I can pass all the clinical weakness tests, and my doctor did them a couple weeks ago and I came out fine. She wasn't worried enough to send me to a neurologist, apparently.
However, when I wake up in the morning, my right hand is definitely weaker than the left. I can't grip things as strongly on my right side. This wears off after about an hour or so. I also have some dull pain in my right wrist and top of my right hand. My typing on my right hand seems a little slower than on my left. I can still do everything like button my clothes and open doors, etc.
I also have lots of muscle twitches in my lower legs, below the knees, and in my feet. I have more twitches on my right side than my left, but I get them in both. In particular my right toe that is second in from the pinky toe has been twitching off and on for weeks now. My left eyelid has been twitching a lot now too.
I am constantly looking for atrophy in my limbs. I did notice that my right pectoral muscle is smaller than my left. Not radically so, but it is noticeable.
I should mentioned that I got really sick with a viral infection a couple months ago. It took me weeks to recover from that. My doctor things this might be some sort of "post viral syndrome."
Anyway, it helps reading some posts here about others who have gone through something similar. I get sucked down the rabbit hole of Google searches at night. Any advice is appreciated.
Thank you,
ATL
ALS weakness doesn't flare up in the morning and improve in the afternoon. Your motor neurons die and therefore destroys the connection with the muscle and brain. All the twitching sounds like BFS. I hear a lot of stories about someone having a virus or cold, and developing it. I've been twitching for 19 months my fourth toe twitches all the time and so do my calves. Eye lids twitch everyday. You are fine twitching isn't ALS. Clinical weakness is not being able to do everyday tasks like brushing your teeth, wiping your ass, locking your door , using a t.v. remote etc.. Stop examining your body for atrophy because you are human and you will find an imperfection and it's going to freak you out. Find a new hobby to help you ignore the twitching and stop over analyzing this because it's a horrible fear that can mentally cripple you.
Hi one good bit of advice is don't dr google it's not helpful and will only fill you with fear and anxiety :) Also sound advice from nivekc251 nothing more too add on that :) Cheers
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughts
Thank you all for you replies, I really appreciate them. And while I can see that what I'm experiencing is really not consistent with ALS, the testing and comparing and ruminating is tough to keep at bay. And then you have the moment
You're right, gotta keep busy. We have a 6 month old now which means that we spend a lot more time at home and less time out doing things which isn't great for not ruminating.
Yeah the viral infection I had earlier in the summer really knocked me out. For weeks and weeks afterward I was just tired and had malaise. It took me a long time to get back to feeling normal again, and now this.
I've been through this stuff before, with various forms of obsessive fear including cancer, STDs, and the one that really threw me for a loop and lasted for years, fears of being gay. So I definitely understand that Dr. Google is not my friend here and I'm really going to commit to staying away from that.
Thank you again, very much appreciated.
ATL
tryingtosurvive1
05-09-17, 06:41
take it easy. Post viral syndrome seems to respond well and resolve with rest (ok, according to the internet.)
A lot of people on the old BFS forum would develop twitches after a virus.
ALS is like "I couldn't open the door and for awhile I thought the doorknob was broken"--people feel normal but can't do stuff. You can read the sticky from the ALS forum that Fishmanpa has reposted, of course.
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughts
definitely worth a read. very clear message
I hear you. I go through an ALS panic roughly once a year. Here in the UK they have awareness campaigns during June, and that increased exposure triggers panic in me, which lasts for days, weeks, or months, depending on how well I handle it.
But hey, you're hardly alone. I've read so many posts on here about ALS fear. It's one of those illnesses that really messes with us HA sufferers.
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughts
listen to fishmanpa
Thank you everyone for your replies. I was doing pretty well until tonight.
I noticed there there is a muscle in my right foot (the side that has felt weak/tired/awkward, along with my hand) that is significantly smaller than the corresponding one in my left foot. It's called the extensor digitorum brevis muscle.
But the thing is, I can flex it. If it was atrophying from ALS, which means that it wasn't getting a signal from my brain, I wouldn't be able to flex, it right? It has me pretty worried that it's noticeably smaller than on the left side.
I also feel like my right hand is slow/awkward/clumsy.
So far I haven't had any "clinical" weakness, as in everything still works. And my doc did strength tests on me as well and said everything came out fine.
However, does anyone have weakness in the morning? My right hand's grip strength is definitely weaker than my left in the morning. Then after about an hour, it isn't weak anymore. Pretty strange.
Thank you for any insight.
ATL
No you wouldnt be able to flex a muscle that was atrophied due to ALS. Weakness doesn't come and go in ALS u know this lol. Everyone is a bit weaker in the morning. Because you go 7 + hours if your lucky lol without using them. It's like going for long car drives and finally getting out of your car. Your legs feel weak. Calm down you are ok try and relax and stop looking for atrophy because u will convince yourself u have it .
You're right, I go a little bit nuts looking for uneven muscles on my right side. As my wife says, no one is perfectly symmetrical. Thank you for your response.
I'm currently trying to keep myself from falling into the ALS rabbit hole again thanks to a persistent twitch in my foot. I feel your mental pain, hang in there.
Hi again,
In the hopes of providing some solidarity, I came across an example sentence in my foreign language study that mentioned ALS (and talked about it inaccurately, I might add), which has caused the all-too-familiar panic and the playing out of scenarios in my head and all of that crap. It's awful stuff, but these thoughts are not facts.
Uneven muscles are normal, because we all have a dominant side.
The ALS one is a tough one to break, I am finding. Because "checking" your body is so hard to stop before it happens. It helps a bit to know there are others out there experiencing something similar. Thank you.
Tonight I noticed again that the extensor digitorum brevis muscle in my right foot, the side that I've been having trouble with, is about half the size of the one on my left foot. And it's really freaking me out right now. I have a doctors appointment next week.
Nothing is symmetrical on the human body. Stop examining your body let the dr do that, that’s what you pay he / she for. And they have all that education. Like you i’m Down the rabbit hole with this ,its easier to see someone else hurting their lives by obsessing than yourself.
Yeah it's true. Well at least we aren't alone down here in the rabbit hole!
---------- Post added at 09:45 ---------- Previous post was at 09:13 ----------
Sometimes it just feels so much like I have early stage ALS. I'd like to list my symptoms here:
- Feeling of loss of coordination/dexterity in my right hand, along with some pain in the palm, top of hand, and wrist. My right pinky sometimes locks up at the middle knuckle. When I grab things it just feels awkward, and sometimes it takes me a couple tries. My typing with this hand feels off.
- Feeling of weakness in right leg, like it doesn't have enough strength. Sometimes it feels "hollow"/tired.
- I have tons and tons, sometimes constant, muscle twitching in my legs, especially my right calf and foot. Secondarily in my left leg, and rarely in my upper body. Sometimes my right foot will just jerk for no reason.
- The extensor digitorum brevis muscle in my right foot is significantly smaller than the one in my left foot.
- When I put my right thumb in a particular position, I can't get it to bend at the second knuckle. It just won't go. If I modify that position, I can get it to bend.
So far, I've been able to pass all the strength tests. Thank you for reading.
CleverLittleViper
30-09-17, 21:52
The symptoms that you describe sound nothing like ALS.
Clinical weakness, as it pertains to ALS, is a failure of something. Not a feeling of weakness/tiredness. It's actually not being physically capable of doing something. For example, one morning, you were able to lift the kettle to fill it up at the tap. The next, you cannot do that no matter how hard you try, and you can never do it again.
Simply feeling weakness in one part of your body, but still being able to carry out every day tasks does not remotely signify ALS.
It sounds to me like you're focusing far too much on this. Ask yourself one thing-would a person without anxiety be putting this much thought into things? Would they, for example, examine areas of their body for differences? Probably not. Your aim is to get to that point.
No one's body is 100% symmetrical. Some people have one leg longer than the other. One foot slightly bigger or broader. Even our faces have elements of asymmetry. This is normal. And not remotely a signifier of something being terribly amiss.
At your next doctor's appointment, discuss your anxiety over your fears of ALS. That should be the focus because no one can live life like this. Believe it or not, anxiety can cause a lot of what you describe. It can cause feelings of weakness/tiredness, make you super aware of your body and how every motion feels so that they feel awkward or "off," cause twitches and makes you hyper-aware of things you didn't even think about before but were there the whole time.
ALS is incredibly rare. It's so rare it's not even worth worrying about. And the reality is, you're not qualified to even suggest that anything you're experiencing is ALS because only trained professionals, through extensive testing, are qualified to do that. Take heart that you pass your strength tests and that is the biggest indicator ever that you do not need to worry about ALS.
Take care.
I hear you, having the same issue here for 2 months. Altough doctors and people reassured me that I'm ok so far, knowing that this is a tricky disease but I still want to trust the doctors and stop worrying myself.
ALS is about "failing" not "feeling".
Positive thoughts
Clever Little Viper,
Thank you very much for that reality check I needed that. I will definitely ask my doctor about something to help with my fears. You're right, it's out of control at the moment and I'm not enjoying life. It's terrible.
ATL
I wish I could take some of my own advice but when I was testing tonight I found that I could tap a little harder with my left index finger than my right one when my hands were flat on the table. And I had more range of motion in it too. This has led to a anxiety spiral, and now I can’t sleep at all. Doing tons of searches about it and freaking out.
ATL - i'm in the same boat as you....but from an objective stance, you need to stop searching...at least for negative stuff.
Like me, if you can't stay off the internet, maybe just start looking at old postings on aboutbfs.com and other stuff that point away from the dreaded disase
Firstly, I want to say I totally get your fear. I'm in the midst of something similar. But you've got to stop the self-testing. It's not reliable and these compulsions are just reinforcing your anxiety. Also, coming on to a HA forum, and sharing about these tests is not helpful to other people going through the same fear who may not have known about them. STOP googling, stop self-testing. You know they're not valid unless performed or interpreted by a neuro anyhow.
---------- Post added at 09:50 ---------- Previous post was at 08:27 ----------
Also, you really shouldn't be posting this stuff on the ALS forums. It's disrespectful, imo. These are questions for your doctor, not people dying from ALS.
you really shouldn't be posting this stuff on the ALS forums. It's disrespectful, imo. These are questions for your doctor, not people dying from ALS.
AMEN! There are several members that have posted there and the patience they have is amazing to a point. Most are banned in short order.
Positive thoughts
Dude! You seriously went on the ALS forum to complain you couldn't do the Star Trek sign as well with one hand as the other. Some of these people type using eye-gaze technology. You need to stay away from there.
Ugh. I know. That’s terrible. I’m embarrassed. It was an awful night. I spend hours alternating heavy objects like Big books holding them between my thumb and ring finger on each hand, realizing I couldn’t hold as much weight on my right side.
I've had those nights too. And I know that in moments like that, you can't see any way out of it but the inevitable diagnosis. I've been struggling with my own ALS fear for five months now. I read those boards too and they fill me with terror, so I try to stay away. No good can come of it. Ultimately, if we have what we fear, no amount of reassurance or nights spent poring over old posts is going to change anything. And the more you google and self-test, the more you will find to validate your fear. It's a vicious circle, and one that needs to be broken. I have no magic answers, but I know what makes it worse.
Thank you. You’re totally right. I appreciate the pep talk. Here’s to no more checking.
It’s so hard though because your hands are ALWAYS right there, to not check.
The best few days I’ve had recently are days when I’ve been able to accept the possibility that I might have this and I had a plan of what to do if I did and I didn’t feel so helpless.
Look, I get it. My fear is bulbar onset, so I am a compulsive tongue/swallow/speech checker. (That's not to say I don't worry about that twitch in my left thumb or the size of my thenar muscles etc etc :whistles:).
It's a terrible, terrible state to be in. But I try to remind myself that even if ALS does start out with subtle sighs, it doesn't stay that way for long. It announces itself. There's no need for us to hunt it down. You've probably read enough posts on the DIHALS board to be able to tell the HA sufferers from those who turn out to have early ALS. And interestingly, the latter are usually the calmest.
Hang in there, time is our friend.
It's so true, those folks who are actually diagnosed on DIHALS are pretty amazing. Calm, collected, if very frightened. I don't know how they do it. That would not be me.
Last night I finally put socks on my hands to make it harder to check haha. Yeah it isn't quiet for long – you've been going through this longer than I, but it's been almost 2 months from me, so maybe in another few months if it doesn't get worse I'll be able to lean on that.
There are a lot of people here who've been down the ALS rabbit hole and come out the other side. Hopefully, they will be long to comment further and help us both a bit ;)
Maybe you should take up playing a woodwind instrument like clarinet or flute, Mel. Your obsessions with your mouth could really help with your embochure!
tryingtosurvive1
07-10-17, 03:27
y'all don't have ALS
and yes, I can totally tell who might have ALS on the DIHALS board. Usually older people with foot drop or obvious grip problems whose doctors have told them it is possible. Or husbands/parents in denial whose worried wives/kids are posting.
No one on *this* board ever fits that profile.
---------- Post added at 19:27 ---------- Previous post was at 19:26 ----------
i do have a much milder totally genetic neuromuscular condition-CMT-that has taken awhile to fully announce itself. So I had slightly more reason than most here to read that board. Probably we should all stay away from it, though.
Maybe you should take up playing a woodwind instrument like clarinet or flute, Mel. Your obsessions with your mouth could really help with your embochure!
Ooh, good idea. I quite fancy the piccolo
---------- Post added at 19:44 ---------- Previous post was at 19:34 ----------
i do have a much milder totally genetic neuromuscular condition-CMT-that has taken awhile to fully announce itself. So I had slightly more reason than most here to read that board. Probably we should all stay away from it, though.
I have a friend with CMT, so am moderately familiar with it. And yes, I need to get my arse off the ALS boards (again). What a selfish condition HA is. I can barely function as a decent human with it :(
Yes, get yourself a flute or piccolo. New hobbies also help manage and keep the mind off anxiety.
I worked out today, so of course my twitching has increased. Usually after working out it’s in my calfs but this time it’s in my feet. Both, but a little more frequent in my right on which is on my “bad” side. And then while watching the twitches I noticed I have a couple things indentations on my right foot that aren’t there or aren’t as pronounced on my left.
Since my symptoms are right side (hand and leg) now I’m worrying about a brain tumor with my sensations of a lack of coordination.
Argh. This freaking thing. I really hope I can sleep tonight.
Muscle twitching after exercise is extremely common. It happens to everyone.
MyNameIsTerry
08-10-17, 08:24
Thank you. You’re totally right. I appreciate the pep talk. Here’s to no more checking.
It’s so hard though because your hands are ALWAYS right there, to not check.
The best few days I’ve had recently are days when I’ve been able to accept the possibility that I might have this and I had a plan of what to do if I did and I didn’t feel so helpless.
Funnily enough one technique in therapy is to agree you have something. It's to come up with a plan if something happens to prove to yourself it's not so bad.
So much in anxiety is reaction. The more you panic, the more the subconscious sees it's important to you and keeps building on. So by agreeing you remove the panic reaction and re frame the issue as not so bad. Ultimately it's not about brainwashing yourself into believing you have it, just a way to neutralise the cycle.
You might come across it on here when others talk about how their therapist has them imagining they had cancer and how would you cope.
The thing is, a lot of this is about the foundations of most forms of anxiety - fear of lack of control and uncertainty. When we take control we empower ourselves and get on with something because we want to rather than being pushed into it with our feet scraping along the floor.
I'm not a HAer but I've had the muscle weakness, joint aches, pins & needles (a form of paraesthesia), aches, etc. Transdermal magnesium helped me with much of this and so does exercise.
Anxiety puts your body under a lot of strain and we need more nutrients because we are burning through them quicker than normal. I've had breakdowns & relapses and you would be surprised how quick you find yourself struggling just to walk up the street when you get back outside after months of doing nothing. But then ask anyone who's broken a bone, the muscle quickly reduces and that's why we have physiotherapy to address it.
So why not try to address issues like strengthening those muscles? Why not try to bath or relax with remedies aimed at helping tired muscles & joints?
As for checking compulsions, look to ERP to show you how to reduce them steadily in a realistic manner. My OCD was very heavy on checking/touching and at the height of it it was hundreds of times a day on many items including my body. It took me some time to stop them all but they are long gone now.
There are ways to cut down those checks, re frame them to dispell the cycle or insert waiting times or other activities. OCD resources will give you all this, it's standard stuff in OCD circles.
Terry,
Yes, "leaning into" your fears is something I learned about when I was in therapy for my last ODC obsession, which was centered around being gay. It lasted for years and was NOT fun. But my therapist talked about accepting the possibility that my fears were true, and that would take the teeth out of them to make me so upset.
And it's true, if the fear is no longer scary for you, then it stops being a fear. Of course, with a disease that slowly paralyzes you and before killing you in a relatively short period of time, that's a pretty tough mountain to climb. But one way I have looked at it is that any time spent worrying about it is a waste. Either I have/am going to get it or I am not. And why waste the time I currently have worrying? I am much better off enjoying life. Easier said than done, but that's the philosophy.
Thank you for your response.
ATL
I still have the fear going nice and strong so I sympathize with you, great attitude of worrying being a waste of time. Wish i could find that mindset
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Ugh. I know. That’s terrible. I’m embarrassed. It was an awful night. I spend hours alternating heavy objects like Big books holding them between my thumb and ring finger on each hand, realizing I couldn’t hold as much weight on my right side.
Dont feel so guilty i myself posted my emg on there and Nikki was nice enough to reply. Lots of people on this site have posted on there and you can tell not from their name but their symptoms, they are exactly what they post here. Hmm never tried to do the Star Wars hand thing .
I still have the fear going nice and strong so I sympathize with you, great attitude of worrying being a waste of time. Wish i could find that mindset
Haven't you had a clean EMG? There are several people on here who continue to worry despite being assured by a neuro they don't have ALS. It makes me wonder what it actually takes to put this fear to bed.
Haven't you had a clean EMG? There are several people on here who continue to worry despite being assured by a neuro they don't have ALS. It makes me wonder what it actually takes to put this fear to bed.
Not clean but not acute denervation its a bad rabbit hole to get out of, because it just doesnt happen all of a sudden that is why it takes so long to diagnose. It’s a gradual process. Unfortunately i had three emg 2 by one dr on the east coast and one by a prominent guy on the west coast. Changed neurologist here on the east coast brought my records in to him, been neurmuscular specialist with als for 30 years. Said that all three were sloppy work. Great. But he said I didn’t need another one yet he could piece some of it together by looking at all three. Makes you feel good. And as usual they say you dont have als today.
I haven't even seen a PCP about my bulbar fear yet. I do wonder, though, about the line between disease conviction and disease phobia and how easily one can turn into the other; about how being told "you don't have ALS NOW" (yay! relief!) can then evolve into a perpetual state of fearing you might develop it. I shudder at the very thought of that.
Yeah that is the scary part , besides the fact i am a vet (twice as likely to get it) and i’m In the right age group, most of the people anxious on here are young not to take away from their anxiousness but it is a plus in their favor
Twice as likely with a rare disease is still pretty rare. I'm not far behind you age-wise (49), so definitely in the demographic.
Not to steal someone else’s post but why haven’t you seen a dr
Too scared. I thought I could wait it out. It's not like being diagnosed sooner makes any difference :/
Actually yes it does , with the new drug that is out the sooner the better even with the old drug
I'll cross that bridge if I come to it.
Too scared. I thought I could wait it out. It's not like being diagnosed sooner makes any difference :/
What's your hypothetical timeline you believe you will be able to magically switch off your ALS fear like a light?
Thelegend27
10-10-17, 04:19
i get tons of twitches, and i have severe HA, but i can honestly say that ALS has never been a fear of mine, sure it's crossed my mind that's the HA in me, but it's never stuck in my mind. ALS is extremely rare, in fact less than 20,000 people per year in the us actually get diagnosed with ALS, compare those numbers to the overall population of the us, thats how rare it is. but just like anyone else here will tell you, the only way to know for sure and to get a peace in mind is to see a doctor.
What's your hypothetical timeline you believe you will be able to magically switch off your ALS fear like a light?
Six months :shades:
(Then nine months, then a year, then two :weep:)
Also, my left bicep started twitching after I worked out today and hasn't stopped yet, so yay me ...
---------- Post added at 20:48 ---------- Previous post was at 20:46 ----------
ALS is extremely rare, in fact less than 20,000 people per year in the us actually get diagnosed with ALS, compare those numbers to the overall population of the us, thats how rare it is
Actually, it's fewer than that. Around 5600. I think 20,OOO is an estimate of the number of people living with ALS at any one time.
MyNameIsTerry
10-10-17, 05:24
Haven't you had a clean EMG? There are several people on here who continue to worry despite being assured by a neuro they don't have ALS. It makes me wonder what it actually takes to put this fear to bed.
Do you think it's any different to any other fear? The context is irrelevant, the theme doesn't matter, it's how it is affecting you that is the issue. If it was about the theme then none of us non HAers should be as anxious as our worries are less about deadly conditions.
What gets you out of any fear? Hard work & time, I'm afraid. Create change rather than passively wait for it to happen.
---------- Post added at 05:24 ---------- Previous post was at 04:58 ----------
Terry,
Yes, "leaning into" your fears is something I learned about when I was in therapy for my last ODC obsession, which was centered around being gay. It lasted for years and was NOT fun. But my therapist talked about accepting the possibility that my fears were true, and that would take the teeth out of them to make me so upset.
And it's true, if the fear is no longer scary for you, then it stops being a fear. Of course, with a disease that slowly paralyzes you and before killing you in a relatively short period of time, that's a pretty tough mountain to climb. But one way I have looked at it is that any time spent worrying about it is a waste. Either I have/am going to get it or I am not. And why waste the time I currently have worrying? I am much better off enjoying life. Easier said than done, but that's the philosophy.
Thank you for your response.
ATL
It's good to hear you say things like this because it's an important early step to empowering yourself into changing this situation you are in.
As for themes in anxiety I'm not much of believer in hierarchy of fear types, someone could be mild with a cancer fear and another person sectioned with fears about going outside. Some have more intense possible outcomes but what is the outcome of a fictional disease? The intensity you feel about it though is the real issue to me but it seems natural to expect the more serious outcome (fictional) to have that propensity so I can understand how it complicates matters when trying to counter evidence things.
You'll get through it, just deciding you want to change shows that because there are so many further behind you in coming to terms with your disorder who need to get to the point you are at to have that realisation. You want to take your life back and you are going to fight for it.
Six months :shades:
(Then nine months, then a year, then two :weep:)
Also, my left bicep started twitching after I worked out today and hasn't stopped yet, so yay me ...
---------- Post added at 20:48 ---------- Previous post was at 20:46 ----------
Actually, it's fewer than that. Around 5600. I think 20,OOO is an estimate of the number of people living with ALS at any one time.
Right, you get my point. Time doesn't matter. When and what will make you put your foot down on this?
When I am unable to stand another moment of living like this
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My bicep is still at it. Can lifting weights do this? I've not had it before
So you are still using this forum to keep your HA alive and kicking?
I think the ALS forum is doing a better job of that :doh:
I think this forum is having its uses too sadly.
I think I am slipping into a kind of magical thinking. Like if I accept it could be anxiety, I'll jinx myself and it'll turn out to be ALS. Likewise, if I don't keep poring over the ALS forums and this one, I'll let my guard down and miss something and it'll be ALS. I know this is not rational, but I can't help defaulting to this line of thinking.
I think I am slipping into a kind of magical thinking. Like if I accept it could be anxiety, I'll jinx myself and it'll turn out to be ALS. Likewise, if I don't keep poring over the ALS forums and this one, I'll let my guard down and miss something and it'll be ALS. I know this is not rational, but I can't help defaulting to this line of thinking.
Are close family members aware of your HA, and are they supportive?
I think if you confided in family and they were supportive (which I suspect they would be), it would get you away from these blasted forums, which are fuelling your HA fixations.
You are probably right. The forums are just more fuel for the HA fire at this point.
When I am unable to stand another moment of living like this
---------- Post added at 13:01 ---------- Previous post was at 12:58 ----------
My bicep is still at it. Can lifting weights do this? I've not had it before
That a really silly, if not dumb response.
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I think I am slipping into a kind of magical thinking. Like if I accept it could be anxiety, I'll jinx myself and it'll turn out to be ALS. Likewise, if I don't keep poring over the ALS forums and this one, I'll let my guard down and miss something and it'll be ALS. I know this is not rational, but I can't help defaulting to this line of thinking.
Magical thinking, also known as anxiety.
It's hilarious to me that you could say something like "if I could accept this as anxiety" all the while so stubbornly proclaiming you have ALS on a HEALTH ANXIETY forum. Like, you couldnt cut that irony with a chainsaw.
Yes, I know it is. Look, the cognitive dissonance alone is just about killing me. I'm holding two contradictory beliefs: that I have HA, and that I have ALS. It's nuts, and making my head implode
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Ha, I wrote my reply before you added to yours, Josh. I know. It's insane.
That a really silly, if not dumb response.
---------- Post added at 22:29 ---------- Previous post was at 22:26 ----------
Magical thinking, also known as anxiety.
It's hilarious to me that you could say something like "if I could accept this as anxiety" all the while so stubbornly proclaiming you have ALS on a HEALTH ANXIETY forum. Like, you couldnt cut that irony with a chainsaw.
Melfish knows how irrational all this is so I don't think your comments are helpful.
I think you should speak to your husband and family about this Melfish. Perhaps the release is what you need to finally "tip the balance". You can't carry on like this - it will destroy you.
Melfish knows how irrational all this is so I don't think your comments are helpful.
I think you should speak to your husband and family about this Melfish. Perhaps the release is what you need to finally "tip the balance". You can't carry on like this - it will destroy you.
Thanks, KK. I do indeed know it's irrational.
I've been trying to avoid offloading this on my husband as he has a stressful job as is, but with the fires in California right now it's just ramped up even more (first responder). I do need to tell him at some point, as it's affecting my mood and making me borderline agoraphobic. I'm a bit of a hermit at the best of times, but it's getting ridiculous.
My family don't live in the US, so I don't want to freak them out long-distance unless it's absolutely necessary. My mum's 81 and doesn't need my shit, lol.
Thanks, KK. I do indeed know it's irrational.
I've been trying to avoid offloading this on my husband as he has a stressful job as is, but with the fires in California right now it's just ramped up even more (first responder). I do need to tell him at some point, as it's affecting my mood and making me borderline agoraphobic. I'm a bit of a hermit at the best of times, but it's getting ridiculous.
My family don't live in the US, so I don't want to freak them out long-distance unless it's absolutely necessary. My mum's 81 and doesn't need my shit, lol.
I'm sure your wellbeing will matter to him as much as his job. You need support to get you out of this twilight zone, or as you're well aware, this will escalate, creating more anxiety issues like agora etc.
Yes, I know I need to get a handle on this rather than just *existing* in this state. Thanks x
As a first responder, I’m sure your husband has seen a lot of people having panic attacks.
Just like a recreational drug, the mind also gets addicted to the anxiety cycle. Just like other addicts, many have to hit rock bottom before they get help.
I agree about the addiction angle but I know this is a controversial subject on here.
Melfish knows how irrational all this is so I don't think your comments are helpful.
I think you should speak to your husband and family about this Melfish. Perhaps the release is what you need to finally "tip the balance". You can't carry on like this - it will destroy you.
She can speak for herself.
She can speak for herself.
She did. And so did I. That OK? :lac:
She did. And so did I. That OK? :lac:
She doesn't have a problem with my posts, so maybe butt out?
This is a forum so KK is perfectly entitled to post if they want.
She doesn't have a problem with my posts, so maybe butt out?
Nope - I post when I want :D
Dave_Lister
11-10-17, 20:31
Melfish, you have read a lot of forums by the looks of it, and I had this fear once too, but it is widely known that twitching does not come before clinical weakness ie: not being able to lift your curling iron or a coffee mug. If you had clinical weakness you would know it.
Twitching never comes before clinical weakness in ALS and some doctors will not even do an EMG for you if you do not present clinical weakness.
Now I know, you might say well I am weaker than before, but perceived weakness and clinical weakness are polar opposites of each other and you would know if you had clinical weakness.
You do not have ALS!
Thanks, Dave :)
It's my speech/swallow that I obsessively monitor right now, but it was the tongue quiver that set me off almost five months when I first noticed it. No-one's asking me if I've been drinking yet, so that's a good thing ...
Just from experience here, the ALS rabbit hole is one of the deepest and most difficult to escape. In many cases, it takes hitting rock bottom before anything will be done. IMO, sadly, this is one of those cases. Nothing being said, despite the logic and good intentions makes a dent.
I just send best wishes that all who have this fear find their way out.
Positive thoughts
What does "rock bottom" mean to sufferers though?
What does "rock bottom" mean to sufferers though?
I'll let you know when I get there ...
For me, I think when the fear becomes so paralysing that even being diagnosed would be preferable.
I'll let you know when I get there ...
For me, I think when the fear becomes so paralysing that even being diagnosed would be preferable.
I really don't think that is true. Whilst you can shelter in the fear it is never reality.
What does "rock bottom" mean to sufferers though?
Totally an individual thing IMO. On here, I've seen it where it gets to the point where no one responds anymore because they realize the fruitlessness of doing so... The "feed the stray cat" thing I've brought up. As helpless as some sufferers may feel, it's equally as helpless and frustrating for those responding and trying to help.
I said this in response on another post....
This is an internet forum. Words on a screen. If it gets too much you can make it all disappear by clicking the little "x" at the top right of the screen then come back the next day when your anxiety ramps up again and talk about your fears some more. It's a vicious cycle. Ultimately, regardless of what's written, the solution lies in you having the inner fortitude to take the necessary steps to help yourself.
Positive thoughts
There is still safety in fear because it has yet to become reality. I can't imagine anything worse than actually being diagnosed. Those poor people.
It’s funny, as I prepare for my doctors appointment I’m thinking about how I’m going to describe what I’m experiencing. What the symptoms are, etc. And it’s like...nothing. It’s stuff that’s all either faded away or are so obscure and meaningless it’s kinda embarrassing. It’s kinda helped me realize how absurd all this is. For now :winks:
Totally an individual thing IMO. On here, I've seen it where it gets to the point where no one responds anymore because they realize the fruitlessness of doing so... The "feed the stray cat" thing I've brought up. As helpless as some sufferers may feel, it's equally as helpless and frustrating for those responding and trying to help.
I said this in response on another post....
This is an internet forum. Words on a screen. If it gets too much you can make it all disappear by clicking the little "x" at the top right of the screen then come back the next day when your anxiety ramps up again and talk about your fears some more. It's a vicious cycle. Ultimately, regardless of what's written, the solution lies in you having the inner fortitude to take the necessary steps to help yourself.
Positive thoughts
I suppose for me rock bottom would not involve an internet forum. I'd be past the point of being interested in any responses at all.
There is still safety in fear because it has yet to become reality. I can't imagine anything worse than actually being diagnosed. Those poor people.
Yes, this :weep::weep:
That's why this particular fear is so paralysing. It traps you, because to go forward is even more terrifying. It removes all hope. With many other diseases, there's a plan. Eat better, exercise more, fight the beast. With ALS, there is none of that. It's a relentless and cruel march towards death. Ugh, I hate that it even exists. It's one of the better arguments against the idea of god.
We are none of us immune from developing ALS (although your research may have unearthed something on this) and that is a fact. The same with cancer (although you will say there is more chance of a cure). You have picked a cruel neurological disease which could strike anyone at any time. Unpredictability/uncertainty/lack of control etc ..it's all terrifying stuff for those living in fear. But do we waste our lives worrying about the what if's and just waiting for the sword of Damocles to descend on us? What is the point?
---------- Post added at 21:35 ---------- Previous post was at 21:32 ----------
Sorry, I know I'm rambling..I'll quit now before I bore everyone rigid:D
Melfish, you obviously have knowledge about HA as you were talking about cognitive dissonance on a post.
Please do not think that I am not having a go, as I am not but I am genuinely curious and would like to understand.
Knowing what you know about how off course your thought process are what is the block to getting yourself to believe this fear is not based in reality?
If you have had similar fears in the past, how did you overcome them?
Agree with everything you've said, except I didn't pick it. I typed two words into google, and there it was ...
There is still safety in fear because it has yet to become reality. I can't imagine anything worse than actually being diagnosed. Those poor people.
Very true. If all this only involved pain and no "safety" or quiet comfort, sufferers would hit a theoretical "rock bottom" very fast and be compelled by the sheer torment alone into taking action. It would simply be intolerable. So I believe there is a mixture of pain and pleasure involved, as absurd as that sounds, because there are people who have spent their entire lives obsessively worrying about things that never happened.
Safety, I can understand at a stretch, but please point me in the direction of the pleasure?
Safety, I can understand at a stretch, but please point me in the direction of the pleasure?
But why "at a stretch"? The avoidance of pain is a form of pleasure. Perhaps not jumping up and down with excitement but relief when you read something that reassures you....then pain when you read of the reality of the disease and its probable impact on your life. Pain and pleasure in this aspect are like two sides of the same coin. But I don't want to get into theory here.
If you prefer the word security or safety then that's fine. But if you only admit to it "at a stretch" then there is something still keeping you afloat. Perhaps it is hope? But living in hope of something not happening is not really living either. Whichever way you look at this there is duality.
MyNameIsTerry
12-10-17, 02:46
Safety, I can understand at a stretch, but please point me in the direction of the pleasure?
Pleasure would imply an addictive element, that's a line where you move into something like an Impulse Disorder or addiction. Whilst there are similiarities between compulsion, addiction, impulsivity, there are also differences that have meant medical professionals define them differently.
They may of course seem even more similiar to sufferers but that doesn't change what the science says.
Are you chasing the high? Or are you trying to find safety?
We have to be very careful when it comes to compulsion vs. impulse. You are clearly trapped by inertia and not seeking to act out things...which means obsessive-compulsive and not impulse disorder (by act, I don't mean chase tests either or chase reassurance).
---------- Post added at 02:36 ---------- Previous post was at 02:34 ----------
Thanks, Dave :)
It's my speech/swallow that I obsessively monitor right now, but it was the tongue quiver that set me off almost five months when I first noticed it. No-one's asking me if I've been drinking yet, so that's a good thing ...
I'm an OCDer, melfish. I can tell you for certain that conducting tons of compulsions a day is like a living hell and I can also tell you for certain that breaking them off greatly reduces that hell.
If you didn't monitor them, once over the anxiety of breaking down those compulsions, you would feel more in control. It's key to getting better, although only one of the strategies needed to tackle what lurks early in that obsessive cycle.
---------- Post added at 02:41 ---------- Previous post was at 02:36 ----------
Yes, this :weep::weep:
That's why this particular fear is so paralysing. It traps you, because to go forward is even more terrifying. It removes all hope. With many other diseases, there's a plan. Eat better, exercise more, fight the beast. With ALS, there is none of that. It's a relentless and cruel march towards death. Ugh, I hate that it even exists. It's one of the better arguments against the idea of god.
Fear is subjective. What you see as the worst is another person's milder. Take a look at other threads on here and see how much others are suffering with things that a simple vaccination jab will deal with (e.g. rabies).
All that matters if that the intensity gets there, whether it's a fear of door knobs or some killer disease. It's not just HAers that get paralysed by fears or end up in psychiatric wards. This type of thinking is just part of the issues with your thoughts, for a start there are worse diseases out there than even ALS. It's just where your hear is right now and you will look back on it as reflectove of the pain you felt at the time once you get through this.
---------- Post added at 02:46 ---------- Previous post was at 02:41 ----------
I really don't think that is true. Whilst you can shelter in the fear it is never reality.
Indeed. We develop new core beliefs. it becomes "normal" to live in fear. Then when you work on recovery it feels alien to feel anything other than this and you panic about having a half decent day.
My anxiety has had a lot of avoidance in it, the need to hide from the world and live in inertia until I get old enough to just pass away. It feels too painful to try to change. Treatment resistence is a challenge for the therapists, but the fight or flight thinks it's only doing what is best to protect us so we are fighting against what feel correct at a deeper level. The subconscous brain is wondering why we are trying to stop it performing a vital function, to it we may as well be trying to stop breathing, but the mechanism for change does exist and therefore nature also realised the possibility that fear can be flawed or needs to adapt. A nasty bear can be shoved in a zoo and tamed.
What does "rock bottom" mean to sufferers though?
I've seen people who used to be on AZ, literally lose their whole lives to their anxiety cycle. They've quit jobs or gotten fired, their family members stop talking to them because they can't take it anymore, they stop spending time with their children and just obsess online, etc. That would be rock bottom to me...when your anxiety is so bad it impedes your ability to live a normal life and keep up your relationships.
Some of these people also seem addicted to their anxiety. Their whole family life revolves around the people they live with accommodating for their anxiety. They get their attention by being sick and/or dying all the time. Years and years the family drops everything they're doing to comfort them, until they finally get sick of it and leave.
Melfish, you obviously have knowledge about HA as you were talking about cognitive dissonance on a post.
Please do not think that I am not having a go, as I am not but I am genuinely curious and would like to understand.
Knowing what you know about how off course your thought process are what is the block to getting yourself to believe this fear is not based in reality?
If you have had similar fears in the past, how did you overcome them?
Elen, we posted at the same time and I just saw this. I'm familiar with the concept of cognitive dissonance, but this is really the first time it's occurred to me that it's applicable to my HA/disease conviction.
I did have HA in my 20s (I'm now nearly 50); it was pre-internet and I'd lurk in the medical reference section of big book stores during my lunch break. From memory, I overcame it with doctor's visits. I don't, however, recall it being this debilitating. My fears then were MS, RA, lupus, scleroderma ... so pretty much all autoimmune.
I really want what I'm going through now to be a reemergence of my HA, and I see that it does follow the pattern. But at the same time, I remain paralysed with fear that it might not be. That's the best I can offer :unsure:
---------- Post added at 19:25 ---------- Previous post was at 19:14 ----------
Thanks, Terry. I'm not sure how to quote bits and pieces of what you wrote, but I just wanted to say there's lots of food for thought in there for me. What you said about compulsions is so true. It is exhausting to wake in the morning and think, "Here we go again," and face *another* day of checking ...ugh. But then if I don't check, I think I"ll miss something. It's brutal.
---------- Post added at 19:28 ---------- Previous post was at 19:25 ----------
Some of these people also seem addicted to their anxiety. Their whole family life revolves around the people they live with accommodating for their anxiety. They get their attention by being sick and/or dying all the time. Years and years the family drops everything they're doing to comfort them, until they finally get sick of it and leave.
That's something I can't relate to. I keep the whole thing internalised. One of my greatest fears is to be the object of pity. I don't want the sick role. I'd hate to be dependent on anyone. I guess that explains why my fear of ALS is so overwhelming.
I think the “sick role” takes years of dysfunction to develop, but it all starts somewhere.
Mel, there was nothing life changing, or a new stress, or trauma that triggered this new round of anxiety?
Apart from my tongue symptom? Gosh yes, a full-on emotional/mental crisis, I was barely eating, had terrible insomnia, the flu, had been to the ER twice with panic attacks, got a DUI, a perfect storm really. BUT had I not had the tongue issue, the ALS fear would not have ensued. Two weeks passed before I googled it. Would something else have manifested? Who knows. But it likely wouldn't have been ALS.
But did the emotional/mental crisis come before the google search or after the google search?
But did the emotional/mental crisis come before the google search or after the google search?
Before
And what caused the emotional/mental crisis?
MyNameIsTerry
12-10-17, 05:35
I've seen people who used to be on AZ, literally lose their whole lives to their anxiety cycle. They've quit jobs or gotten fired, their family members stop talking to them because they can't take it anymore, they stop spending time with their children and just obsess online, etc. That would be rock bottom to me...when your anxiety is so bad it impedes your ability to live a normal life and keep up your relationships.
Some of these people also seem addicted to their anxiety. Their whole family life revolves around the people they live with accommodating for their anxiety. They get their attention by being sick and/or dying all the time. Years and years the family drops everything they're doing to comfort them, until they finally get sick of it and leave.
I lost my career, all my friends, etc to mine. It was an awful time but then I see others in anxiety circles who have ended up on psychiatric wards dosed upor spent many years as alcoholics including some who don't leave their beds.
One guy I used to talk to at the walk-in groups had lost his marriage to it, although his wife was a manipulator (worked in mental health too :mad:), and took him for everything. He couldn't afford to take legal action, legal aid for these cases ended and he was penniless, and had to agreed to what his loaded wife forced on him. He was living in a bedsit unable to afford heating a panel heater and had only one set of clothes to live in.
Rock bottom might mean something different dependant on what forms your anxiety takes? For instance, losing your job & mates, like I did, isn'ty so hard when you do some major avoidance with GAD and ride the meds rollercoaster as many do?
I can't really say for me but I think being sectioned, self harming or possibly being made homeless would be closer to mine.
My GF said she reached hers at uni when she suffered depression. She got so sick of herself (not attending classes & nearly failed her degree, not talking to family, barely eating and never moving or going out) and forced herself to deal with it. I haven't found this is the case for me as with anxiety I hated whay situation yet it still seemed too hard to get out of it. So, I guess it's going to be a very individual thing.
---------- Post added at 05:35 ---------- Previous post was at 05:14 ----------
Thanks, Terry. I'm not sure how to quote bits and pieces of what you wrote, but I just wanted to say there's lots of food for thought in there for me. What you said about compulsions is so true. It is exhausting to wake in the morning and think, "Here we go again," and face *another* day of checking ...ugh. But then if I don't check, I think I"ll miss something. It's brutal.
Aha, now that I can solve! When quoting you just copy & paste the start/end tags around the bits of text you want to split up. Like so...
Thanks, Terry. I'm not sure how to quote bits and pieces of what you wrote, but I just wanted to say there's lots of food for thought in there for me. What you said about compulsions is so true.
It is exhausting to wake in the morning and think, "Here we go again," and face *another* day of checking ...ugh. But then if I don't check, I think I"ll miss something. It's brutal.
:yesyes: Click Reply and you will see how I've wrapped the tags around that text.
What I said earlier about ALS not necessarily being the worst, I meant not the worst for all, but it can easily be the worst for you. I've spent a lot of time talking to OCDers about intrusive thoughts and there are some themes that hit some sufferers worse than others. Talking to these people usually reveals a history of different themes but they haven't pushed their anxiety to such extremes. This sounds like your worst one but please don't think you can't get out of it, you can, and we all will be hoping you find your way.
This was me:
http://www.nomorepanic.co.uk/showthread.php?t=169503&page=4
That first year of the relapse more than any I would spend my days believing I was cursed to be like that for the rest of my life. But I'm not. It's been a hell of a few years, and I still have plenty of a way to go, but all that compulsive activity is gone now. I sometimes get the odd twinge of it but my mind just handles it and I don't start. I can see my intrusive thoughts but they come with a "meh, who cares" thought on the back of them and they just float through.
Back then I would have been happy if life just ended. Like you say, it's brutal. I had plenty of low days where I would actually wish things on myself that people post about fearing on this HA board. I would be walking the streets in tears and going past churches verbally asking for help (and I'm agnostic). It's just pain. How many people with physical conditions have points where they get so sick of pain that they pray for something to end it?
Pulisa will agree with me here I think, look at the threads of Sunflower. I joined at a similiar time and she was in a real state, I felt like she was like me at the relapse. She was too terrified to take any antidepressants and her posts were quite typical of someone unable to cope or move forward. A few years on and she has left here as a new person. She has her life back and she even got onto meds too.
There are others just the same. I'm not one of them yet but I'm not going to give up on that. Looking back a few years I was a real mess. I remember my thought processes and how I couldn't get beyond them. Once you turn some corners you look back and really feel it was just negative thinking but at the time it felt the be all & end all.
Thanks for your post, Terry, and the link. Much appreciated. I haven't been on the ALS forums for two days and I'm trying my best to curb the mouth checking.
It's odd, the B&W thinking I have around this. It's either everything, or it's nothing. It's ALS, or it's I brought this on myself my googling my symptoms. The latter still seems less likely than the former to me, more wishful thinking (despite the fact I understand the incidence of bulbar is around 1 in 200K). Weird.
Mel, the reason why I asked about what emotional/crisis that you went through, is because often people get HA as a result of PTSD.
I go to a traumatic grief group, and a few people in there have gotten HA as a result of their PTSD. One person developed HA after their child died after an unknown condition. Another person developed HA after the death of their child to an accident (not health related at all). After many sessions of therapy, the person realized that the HA was a distraction of sorts. The anxiety and worrying about whether they had a serious disease, as sad as it sounds, was actually easier than dealing with the loss of their child.
I just want to make sure that PTSD isn't the issue with you. If it is, you need to get some specific PTSD help.
I've wondered about PTSD before. My health anxiety dates back to childhood, though it's never been this disabling. I'm adopted, and apparently separation from the birth mother causes a primal wound so deep that it wires the baby's brain to be always on high alert, hypervigilant for danger to the self etc. Adoption theory texts categorise it as PTSD.
That could be, but I was referring to whatever happened right before this latest episode.
No, it wasn't a single event, it was more your classic cluster%#@*, a series of bad decisions and ... I hesitate to use the word "traumatic" although it was devastating at the time and I saw no way out ... events. There was a lot of physical and emotional fallout. Sorry if that's vague but I don't want to give precise details on a message board.
Basically it was six weeks of hell and my tongue did its random thing at about the four-week mark.
Well a cluster of events can still be traumatic... You may not necessarily have PTSD, but it’s why your latest bout with HA was obviously triggered. If I were your therapist, that’s where I would start...especially since stress causes muscle twitches and heightened stress causes anxiety. You have to look at not only dealing with anxiety, but also it’s triggers to reduce and get rid of it.
Nearly all the stressors have been resolved. I've dealt with all the ones in my control. The main thing causing me stress right now is my fear that I have ALS
Then go get checked out and move on. Stop putting it off. Even if your appointment is two or three months out, it will come eventually and you can move on.
I agree. And maybe think about how you will feel and react when you are told you do not have ALS because tests will be pointless if you are just going to question their validity or read up about another test which would have been more specific etc etc etc
I agree with AV and Pulisa - go make an appointment and end this dance of death. I'm sure your OH will fully support you.
Thanks, all of you. That is the only rational way forward. I know that.
My thread was hijacked, but I'm going to just keep posting on it like it wasn't.
I saw the doctor last week and she did some tests on me, strength tests mainly and also reflexes, and said she didn't see any reason to send me to a neurologist at this point. I still have the feeling of awkwardness/heaviness/slowness in my hand and she thinks that he could be related to early carpel tunnel syndrome. I still do not have any clinical weakness. I also feel like I make more typing mistakes with my right hand than I do my left hand.
So for now she recommended that I limit my computer time where I can and wear a wrist brace at night to keep my wrist straight at least for that period of time. It could be a repetitive stress issue.
Thanks to everyone for your support here, I feel like I've been worrying a lot less. I'm staying off the Google searches, off the ALS boards, staying busy and healthy, and trying to understand that if this thing is going to come for me, well it's going to come for me and there isn't much I can do anyway. I did lay out a plan that I am comfortable with if things take a turn for the worse. So at least I have a little bit of piece of mind there. Accepting the possibility that whatever I am fearing could be true I think is the best way to take the teeth out of the fear.
ATL
MyNameIsTerry
17-10-17, 01:42
This is great to hear, ATL. You could have been chasing more tests, panicking over whether things have been missed, etc but you are trying your best to accept it all.
I hope you contibue to find your inner strength, because you do have it, and keep moving forwards with your recovery.
My thread was hijacked, but I'm going to just keep posting on it like it wasn't.
I saw the doctor last week and she did some tests on me, strength tests mainly and also reflexes, and said she didn't see any reason to send me to a neurologist at this point. I still have the feeling of awkwardness/heaviness/slowness in my hand and she thinks that he could be related to early carpel tunnel syndrome. I still do not have any clinical weakness. I also feel like I make more typing mistakes with my right hand than I do my left hand.
So for now she recommended that I limit my computer time where I can and wear a wrist brace at night to keep my wrist straight at least for that period of time. It could be a repetitive stress issue.
Thanks to everyone for your support here, I feel like I've been worrying a lot less. I'm staying off the Google searches, off the ALS boards, staying busy and healthy, and trying to understand that if this thing is going to come for me, well it's going to come for me and there isn't much I can do anyway. I did lay out a plan that I am comfortable with if things take a turn for the worse. So at least I have a little bit of piece of mind there. Accepting the possibility that whatever I am fearing could be true I think is the best way to take the teeth out of the fear.
ATL
I’m glad you are dealing so wisely with your problem, i’m Sure you will be okay. I need to apologize since i was guilty by replying to someone on your thread who asked me a question. It’s very rude and no one should do that. Peace bro
No worries! Thanks for the message and I hope you are doing well too.
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