Grandfather's Fasciculations: Update

[TwitchyMD]

2 months ago I posted about my grandfather (91) having diffuse, widespread fasciculations in his lower legs, involving especially tibialis anterior and not the gastrocnemius. After 2 months, his "foot drop" seems to be either better or he did not have it before. His fasciculations are not typical BFS (he does not know about them at all and they appear on the outer leg muscles). Because he has no sensory symptoms (pain etc..), the doctors were sure it is either MND or something unknown. You can imagine the stress I have been through - familial ALS patients do have fasciculations often before weakness and I have been a wreck..I basically accepted as a fact we have it.But two months are a lot of time for ALS patients, especially when older than 70, then ALS tend to be pretty aggresive...and things are still the same. I fear how things will be in another 2 months...but hope it will be the same.Some people might remember Basso, who called me names (and says I was a fake, an idiot, liar...) for saying that BFS might be inherited- as A.Eisens book about ALS goes: "cramp-fasciculations syndrome might be recessively inherited".I hope this is the case..my biceps are crazy when I use them, my chest twitches a lot...but I keep going through the 7th year.

 

[saige011]

Docen,I think you've answered your own question when you say that his weakness has dissipated. The one-liner I'll not forget from my NM Specialist -- "ALS is a disease of weakness and you don't have any." No offense, but a 91-year-old man's body is not going to be perfect, and fasciculations are much more common in the general population than you might think. You don't have ALS after 7 years of the same related symptoms and no clinical weakness. Having said that, I've been going through the same fears. I twitch much more in my upper body (trunk) region than most on this board. I've seen your prior posts where you think that upper body twitching is way worse. My biceps seem to twitch like crazy when I use them, and I have tightness in the muscles for days after even minimal exercise. I am not kidding when I say I have an insidious twitch in my right rib that has gone on unrelentingly for nearly 2 months. I sometimes need a light just to see it! I cramp, twitch, etc., and yet I'm still trying to hang in there. I know it's hard, but just know that others identify with your symptoms, and you are not the only one going through this nightmare. Thanks.

 

[Gracer]

good to see your grandfather does not progress in weakness despite on his more than respectable age.