Question About BFS & Family?

[HaleyHH]

Just a question that may have been addressed before, but I haven't seen it. Does anyone have other blood-related family members who suffer from BFS or anything similar? I have had BFS for over seven years, and two years ago discovered that my first cousin (male, one year younger) was going through the same thing. He's a physician and still thought he was dying of ALS. Had the complete workup, and like most of us, still wasn't convinced that it was all benign until many months later. Also, my sister had onset of many BFS symptoms (migrating numbness, clumsy hands, shakiness, perceived weakness, tingling) about three years ago, and had a full neuro workup, which showed nothing. Now, she is having another flare-up--classic BFS symptoms, except not a lot of fascics, which brings up my second question: does anyone on this forum have BFS symptoms with the exception of numerous fascics? She has a few twitches, but the other BFS symptoms are much more prevalent. She's worried, but I see so many of the same symptoms that I had that I really think she's got the same thing. Thanks for any help or info. on this!
Lisa H.

 

[alyLeoNCali]

Lisa:

I don't have anything really concrete to reply with. But I do note in the literature that the autoimmune response itself can be an inherited thing. My mother had hypothyroid for many, many years. Mom and two relatives had peripheral neuropathy, although in one case it was probably pharmaceutical- and alcohol-related.

To address your sister's symptoms. What started 7 months ago for me was a twitch between my thumb and finger. My chin trembled, and my wrists and knees felt weak. Although I had some all-over twitching, my scariest symptom was the weird internal shakiness. Only in the last couple of months would I say I've felt more of the random twitches, but that's probably just because I've felt (or acknowledged) fewer of the other symptoms.

In my case, I think the culprit virus is latent HSV (herpes simplex virus). A few years back, I had a sensation of tingling, vibrating feet, went to a neuro, got [blud, as close as Firefox web browser lets me get to the word I meant] tests for vitamin deficiencies, thyroid, etc., and accepted that nothing was seriously wrong. The tingly-foot stuff just faded away. Then, 7 months ago, I started noticing significant BFS symptoms, and I started getting numerous little outbreaks of tiny, tender fingertip blisters. After so many months, I noticed my symptoms have faded a bit...and happened to notice the little blisters went away too.

I keep checking on this board, hoping some research study will unravel the mystery and find that easy cure. In the meantime, I hope your whole family copes nicely. After 7 years, you seem rather accepting!

--alyLeoNCali