What's the odds?

[StevieBoy369]

New to this forum.  Thank goodness for this exchange of information.  I have been a twitcher for seven - eight years.  DX of idopathic sensory neurapathy which has basically resolve itself.  DX came after all neuro test (blood, EMG, MRI, Muscle Biopsy, etc).  I was also found to be anti_MAG antibody borderline.  I recovered nicely expect for the prominant fasciculations in the calves, thanks I believe to antidepressants and removing most strees from my life.

HOWEVER - out of the blue within the past three weeks I started experiencing very troublesome twitches or spasms that come and go in my left shoulder, at times they are fierce.  Naturally, considering all I went thru 7 yrs ago, I'm now in a panic state, can't sleep, lost appetite, etc.  I am feeling as though the shoulder is getting tired more easily, and my mind is making me feel as though my whole body is under attack.  Of course an ALS Dx is always on my mind. And wouldn't you know - back then I had 100% covered insurance, now I have poor insurance, so this latest odesy is going to be costly.

1) My question is what are the odds of me experiencing my current symptoms given that I have had fasciculations in my calves for 8 yrs?  I realize they may be unrelated - it just seems odd the twitching is starting in a new additional place.  Is this common?  They say the odds are about 1/100000 of ALS.  I'm trying to reassure myself that my odds are astronomical. Looking for that way of hope.

2) I've read weakness is a major factor in ALS.  I know this varies, but how long does it usually take to get profoudly weak? Of course now I am imagining every muscle getting weak.  The mind plays some nasty games sometimes, especially when you can't sleep from worry.

I can't get a neuro exam until December so this is going to be a long rough haul!  Thanks for you time.

[twitchingteacher]

I'm not a dr. or anything, but from eveything I've read here, I would say the odds are pretty high youu don't have it. Only about 5,000 a year are diagnosed, and without weakness (which I learned from my neuro means the muscle does not function, not to be mistaken for fatigue, where you get tired doing something) you don't have ALS. I'm not sure how long until you are profoundly weak, but I hear you notice things (like not buttoning things or being able to put keys in a lock) before you have twitching. Hope that helps!

[StevieBoy369]

Thanks for the comment.   I have developed some tiredness in both arms and now my legs seem to tire easy - mostly my calves.  My wife says it's all in my head.  I headed to my GP on Tuesday, and onto a general neuro the following Tuesday.  So maybe I'll get some answers.  I remember one doc here saying something to the effect if you have normal EMGs and fasciculations without weekness chances are you will not develop ALS.  I know there are no guarantees in life - but I have have twitching calves for 8 yrs with no weakness - until about a month ago that is. Now I have all this other stuff cropping up.  I'm soooo tired of this stuff.  Thx for hearing me out.  I take it you are a twitcher.

[Rachel_W]

I would recommend you do a search online for BFS; benign fasciculation syndrome.  There is a website but I am not sure if I am allowed to put it on, but if you do a searc "aboutBFS" it will lead you in the right direction.  Even though it is a benign condition and the main symptom is twitching, many people on there (including myself) have a wide range of symptoms, such as exercise intolerance, and most if not all have been to see a specialist and had EMGs and other tests to rule out the worst-case scenario.  

As far as I know, most people get weakness first with ALS and then twitches, very rarely the other way around.  I understand your fears, as even though I was given the all clear by an ALS specialist, the anxiety that can bring on the related symptoms is hard to get rid of and it is a viscous cycle.

I would go to a neurologist for a clinical exam, and from there he may or may not suggest an EMG, but that again will not mean that he suspects anything.  My doctor told me that he was 99% certain I did not have anything after my clinical, but did the EMG to absolutely make sure.