Hopefully BFS, but my grandfather died on ALS

[rutra80]

Hello, since over a year I have fasciculations which happen just about anywhere on my body. I did have a quick EMG (2 nerves and 2 muscles tested) and it was clean (but really I do fasciculate, my wife saw some visible ones). I visited several neuros and as for now there are no obvious abnormalities, except some teeth marks on my tongue, and some dents which I think wasn't there some months ago (near the thumb for example). I can't say I have any weakness, I'm just fatigued, I think my speech is more slurry (nobody confirms that), and I drop things more often. Etc. A perfect BFS case, except that my grandfather died on ALS almost 30 years ago which makes me somehow more burdened (although my SOD1 gene is fine).
Medical care in my country is diseased and I can't count on any support whether we are talking about information or diagnosing. It's a miracle that after half of a year I succeded to have an EMG (even thought I was willing to pay for it). Only if I begin to be unable to raise my hand, walk, or swallow, I can count on any diagnosing.
Anyway, I'm well after the time when it striked me that my symptoms + ALS history in family = a reason to be deathly scared. Now I'm relatively calm, waiting for the time to pass until it will be obvious that no MND is this slow. Until then I will keep questioning. So, please let me ask you a question - are there many of you who had fasciculations for over a year without other obvious symptoms but who finally were anyway diagnosed with MND?

 

[rutra80]

Is it possible to edit posts? I'm 33 BTW.

 

[Nikki J]

Hi i am sorry about your grandfather. As I am sure you know with only one relative with ALS the chances of it being familial are very very very low. Only 5-10 percent of ALS is familial and most of us have multiple relatives. I am the 6th to be affected in my lifetime. No weakness, normal EMG and neuro exam all go against ALS. As you say sounds like bfs
I can't answer your question. I had weakness for 3 weeks,twitching of only that area for another three and then both abnormal neuro exam and EMG. My symptoms were/are mild so far I only had the EMG as part of a research study for FALS otherwise I would not have thought enough of it to get it checked out

 

[Nikki J]

Forgot to add knowing that I had the genetic defect I used to worry about things like clumsiness but it turns out the real onset was nothing like that!

 

[rutra80]

You mean that your 5 relatives have ALS? I have a son and me and my wife would like to have another baby, but we are waiting until things clear up, to avoid spreading of this curse.
I have many relatives who could also inherit it, they're all fine so far. Unfortunately my grandfather was an orphan so we don't know if in the past there were family members who had such disease. The probability that I inherited it is very low indeed, but not 0.