ALS fear at it's worst now

[twofatslugs]

Hi there, I'm here again with a horrible and crippling ALS fear that I can't seem to shift or escape, it's almost consuming me with how scared I am of the awful disease. I have a variety of symptoms such as aching muscles and twitching legs, numbness in my fingers when I wake up, twitching tongue and tremors when I do a variety of things such as when I whistle, my lips quiver or when I squat my left leg shakes violently and my right leg doesn't.

The thing is, I've been to my GP twice now with these symptoms and he doesn't seem to think anything of it which Is a good sign I suppose, but since my tongue has started twitching I can't seem to shift my fears. I went to my GP today with my tongue twitching and he said it all looked normal, he also did some facial nerve tests which involved my blowing out my cheeks and him forcing them in to test for resistance, checking that I can push my shoulders up and also checking I can keep my eyes shut while he's trying to pull them open.

I passed these perfectly well, but for some reason I'm still awfully scared and think I have ALS. My right arm feels weak when I'm typing this, but I also read that aching doesn't seem to be associated with ALS, regardless I still can't shake my fear.

I don't know if this is also related to ALS in anyway, don't want to google it, I struggle to walk on my heels, I was just randomly testing my body strength and when I walk on my heels, after a couple of minutes my toes begin to wain and touch the floor.

Any help or advice would be greatly appreciated, need these nerves alleviated. I have a therapy session on the 27th of this month which can't come any sooner.

[Serenity1990]

But you don't have any of the synptoms of ALS. You might as well worry about an eye infection your synptoms are such a poor match!

[twofatslugs]

But you don't have any of the synptoms of ALS. You might as well worry about an eye infection your synptoms are such a poor match!

I always thought a tongue twitching at rest was an ALS symptom! Makes me relieved that the rest of my symptoms are not ALS related. To try and prevent my left leg from violently shaking when I squat/use the clutch I'm going to try at the very least to strengthen my leg muscles.

Thanks for your response, but I'm still rather concerned about the tongue twitching at rest, even though my GP said it's seems normal. (odd I know, guess my HA really has be doubting my GP this time).

[Serenity1990]

Yes fasciculations happen in ALS. However it happens AFTER obvious clinical weakness. Not feeling weak, odd, or whatever else, rather one day you can pick up a kettle with your right hand and the next day you just can't. And then fasciculations start. In that part of the body only. Your neuro exam at the doctor's would have also been very abnormal. In terms of diseases, let alone neurological diseases, ALS is pretty much as serious as it gets. It would be very obvious to your doctors that something was wrong. Luckily it's pretty much as rare as it gets too.

There is a condition which I have called Benign Fasciculation Syndrome, which is strongly associated with anxiety. If you want to read something read about that. Don't self-diagnose or let anyone do so on the Internet, but benign and boring things like this are far, far more common.

You might find these useful.

http://www.bfsrecovery.com/whatisbfs.php#q1

http://www.aboutbfs.com/forums/viewtopic.php?f=8&t=16549

[twofatslugs]

Thanks for the response and sorry for the late reply. I read a post on an ALS forum from a neurologist who was a specialist in mnd and ALS for 40 years, his post was meant for those with Health Anxiety like me and it has put my mind at ease somewhat. I don't have any of the large ALS symptoms, and while my tongue is twitching and I can't feel it, it seems to be normal. BFS sounds a lot like what I'm experiencing.

I won't be able to shake the fear for a while yet and I'd like a second opinion from another medical professional just to be totally sure. The slurred speech section was also very helpful, the speech issues with bulbar are easily noticeable and you can't pronounce words, not tripping over them. The twitching tongue will scare me and the fact that it doesn't stick out straight will scare me for a while but I hope to get over it soon.

Thanks again for your response

[Allie89104]

Could you post this post by the doctor with 40 years experience? Think it would help allay some of my fears :)

[KayeS]

I've had all of your symptoms. Twitching tongue, legs, everything. My lips quiver when I whistle, if I try and scrunch my nose up half way, it quivers and won't hold still... all things like that. Don't worry about it, it's just the way some people are :)

[TylerB]

I've had all of your symptoms. Twitching tongue, legs, everything. My lips quiver when I whistle, if I try and scrunch my nose up half way, it quivers and won't hold still... all things like that. Don't worry about it, it's just the way some people are :)

This calmed me down so much! Thank you. I’ve been obsessed with both of these little tremors/quivers thinking I was dying for the last 6 months!

[BazB44]

tell me about it. it all started with me 2 years ago, ive felt bad and good off and on. I felt great until 2 weeks ago, I went downhill big time and have been crying so much. I don't know why, but leg twitches bug me the most. ive felt so run down and fatigued the past few days, like I cant function. I went to the gym yesterday though, lifted as strong as I always do. But today I feel so weak, fatigued, twitchy in my thigh again, rumbling near the knees. Ugh I hate this fear, its the worst rabbit hole ever....even 2 years later.

[WiseMonkey]

Hi there, I'm here again with a horrible and crippling ALS fear that I can't seem to shift or escape, it's almost consuming me with how scared I am of the awful disease. I have a variety of symptoms such as aching muscles and twitching legs, numbness in my fingers when I wake up, twitching tongue and tremors when I do a variety of things such as when I whistle, my lips quiver or when I squat my left leg shakes violently and my right leg doesn't.

The thing is, I've been to my GP twice now with these symptoms and he doesn't seem to think anything of it which Is a good sign I suppose, but since my tongue has started twitching I can't seem to shift my fears. I went to my GP today with my tongue twitching and he said it all looked normal, he also did some facial nerve tests which involved my blowing out my cheeks and him forcing them in to test for resistance, checking that I can push my shoulders up and also checking I can keep my eyes shut while he's trying to pull them open.

I passed these perfectly well, but for some reason I'm still awfully scared and think I have ALS. My right arm feels weak when I'm typing this, but I also read that aching doesn't seem to be associated with ALS, regardless I still can't shake my fear.

I don't know if this is also related to ALS in anyway, don't want to google it, I struggle to walk on my heels, I was just randomly testing my body strength and when I walk on my heels, after a couple of minutes my toes begin to wain and touch the floor.

Any help or advice would be greatly appreciated, need these nerves alleviated. I have a therapy session on the 27th of this month which can't come any sooner.

ALS does NOT present with sensory issues like numbness or tingling, so it's not that.

[melfish]

This post is from 2015, so hopefully they've figured it out by now ;)

[WiseMonkey]

This post is from 2015, so hopefully they've figured it out by now ;)

Oh, that will teach me not to look at the date of posts :blush:

[melfish]

Oh, that will teach me not to look at the date of posts :blush:

Heh, not your fault. An ALS-worrier has obviously been trawling the archives ...

[BazB44]

I wish. Ive had issues for 2 years (though I remember having twitches 5 years ago) and im still worried. I spent 2 hours crying yesterday....yeah im bad

[Kingdawson]

I wish. Ive had issues for 2 years (though I remember having twitches 5 years ago) and im still worried. I spent 2 hours crying yesterday....yeah im bad

There has never been a case of ALS to present as twitches for 2 years without other issues so what are you worrying about?