ALS/MS scare- terrified!

[Murphy93]

No problem, but since I’ve gone through the same fear for 1-2 months, I’ll try and help you get over it again, because I know how consuming it can be. Twitching in ALS is the last symptom, as it’s caused much after you’re paralyzed and can’t move. Your twitching is something very common in people with health anxiety, benign fasciculation syndrome. Look, if you can stand on one leg, and complete your day to day tasks, then you don’t have ALS and you’re wasting a lot of money; last I heard it was $400 to get checked for ALS, maybe even more. The twitching some people experience before ALS isn’t caused by ALS, but rather by things like working out, being stressed out, and etc. People who get ALS sometimes assume that the twitches they had prior to the onset of the disease is related to ALS, but it’s not. Look, when you go to your neurologist, he/she is going to test to see if you can stand on one foot, if you can grab and hold certain things, and other simple things of that sort. After that, he’ll say that you don’t have ALS, and that it’s a waste of money to get an EMG. I however, believe you’ll force them for the EMG, of which is both painful and pricey. After this, you’ll feel confident until out of nowhere your symptoms get worse, and then you start to think your neurologist made a mistake while doing the EMG. This has happened to so many people in the ALS rabbit hole, and the only way to get over it is to either accept the possibilities of getting ALS, or lose of the fear as a whole. I’ve done both, and I’ve done it without any medical help. If I can do it, you can too. If you truly believe you need the EMG or the check up with the neurologist, then so be it, but in my opinion, it’s pointless because as I said even in the worst scenario, in which you do have ALS, it makes no difference to find out early, as the disease has no cure. Best of luck.

Hello panda

Your last two posts have been amazing honestly put me in to touch which is just what I needed !!

29 year old female twitching for 8 months and have lived my life down this hole for the whole time! I’ve been miserable and convinced myself I have it .

8 months down the line I’m still here - still standing on one leg still walking and doing my job.

Thanks for the tough love hoping I’m coming to the end of the tunnel

[its1111]

Hello panda

Your last two posts have been amazing honestly put me in to touch which is just what I needed !!

29 year old female twitching for 8 months and have lived my life down this hole for the whole time! I’ve been miserable and convinced myself I have it .

8 months down the line I’m still here - still standing on one leg still walking and doing my job.

Thanks for the tough love hoping I’m coming to the end of the tunnel

Agreed- thank you. Murphy, you and I sound like we have similar issues. I've been twitching for about 8 months too. I honestly didn't let it bother me too much until I saw my doctor and he freaked me out!!! Maybe we can support each other...the rabbit hole really sucks lol

[Murphy93]

Agreed- thank you. Murphy, you and I sound like we have similar issues. I've been twitching for about 8 months too. I honestly didn't let it bother me too much until I saw my doctor and he freaked me out!!! Maybe we can support each other...the rabbit hole really sucks lol

I know!! I think deep down somewhere we know were actually okay as 8 months is a long time! If you ever need to talk to anyone I’m always here to listen! I know how lonely it can feel

[HelloPanda23]

I’m glad my posts helped; nobody deserves to go through the constant fear that they might die because of an awful disease, and so I really hope you guys get better from here on out!

[its1111]

So I had a Neuro appointment for my twitching that has been going on for 8-9 months.
He did the standard questions, neuro exam, etc. He was very young, but told me his fellowship was in ALS and muscle disease. I passed the Neuro test and he said my reflexes were fine.
Anyway, I basically told him my biggest fear was ALS. He said well, I am going to do an EMG/NCS, to rule it out and other bad things. But even if it is ruled out, I want to see you throughout the year. He said I don’t think it would progress to ALS... but that’s what the study is for.
He also told me that he has twitching and has done tests on himself for ALS...
I’m not sure if all this makes me feel better or not?? It’s almost like I wanted him to be like ok, there is a 99% chance you don’t have this, so stop worrying. But he didn’t... are doctors not allowed to say things like that due to liability, etc? Did he say as much as he could?
Thanks for the feedback. Helps talking it out.

[jojo2316]

That appointment sounds unnecessarily unreassuring! Are they doing a research project? That seems a little odd, as I would’ve thought research into the link between twitching and progression to ALS would need data from a very large sample population. Because if the link is there at all, we know it is TINY- since so far the evidence suggests there is no connection between benign twitching (twitching with no clinical weakness) and future ALS. I went to a neurologist once and she said she had never once seen benign twitching progress to ALS in her entire career. So- 99% chance you don’t have ALS is a severe over estimation (if 1 in a 100 apparently benign twitchers went on to develop ALS the link would be EXTREMELY OBVIOUS). It’s more like a 99.99999% chance you don’t have it.

[its1111]

Thank you for this. I agree, I was wondering about the research myself. I do have some right arm weakness after repetitive use, but it’s not all the time. The only thing I can think is because he is fairly new, he won’t give me a definitive answer until after the EMG? I mean he did say it’s unlikely it would be that because it is a progressive disease, but the EMG will give us a better understanding of what’s going on. And that it could be BFS or something else. Either way, I guess I was just hoping for him to be like.. look, you don’t have this. Stop worrying. Ya know?

[its1111]

Has ANYONE experienced this?? Trying to figure out if this is anxiety or medically related:
For the past couple of weeks I have been suddenly awakened (always very early in the morning) by what feels like my bed is shaking or vibrating. At first, I would sit up to see if my cat was doing it or something was causing it, but the cat wasn’t there. As it has happened a few more times, I am realizing it is like my body is vibrating from head to toe on the inside. As soon as I fully wake up and move, it stops. It is the FREAKIEST feeling!!!
Has anyone ever had this??? I am currently being tested for a number of neuro isssues, so it frightens me that this could be another symptom. I unfortunately read that many people with MS experience this, but I am hoping maybe it could be anxiety if someone else has had it happen?

[katniss]

Omg!!!!! I HAD to comment on this because I went through something similar in my teen years. I didn’t have health anxiety at the time so didn’t really care or ponder on why it was happening. I remember wondering if it was something supernatural? Looool. But now that I’m older and I read your comment, I couldn’t help but connect it to my experiences as a teen. I would say about 10 to 12 years ago. And I remember sometimes it would feel like pretty clear vibrations. Anyway, it has gone now. why are you undergoing neuro tests? I can’t imagine this being neuro related.. always thought seizures were something that happened unconsciously so it can’t be that

[Elen]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen