Living in Fear of ALS

Dad died of ALS in late 80's w/in 16 months of diagnosis. Fear remained in back of my mind. 3 years ago started to get thumb twitch that lasted 3 monthe and then switched to other hand. June 03 severe eye twitch that started my constant dwell on ALS.

Saw family doctor (Sep 03) who sent me to a neurologist. Calves started twitching on way home from family doc. Neurologist diagnosed BFS because no loss of strength even though I had very brisk reflexes. Said I should go on Zolft. Left feeling I was just blown off so 3 weeks later I decided to take it up a notch and see a Neurologist at Stanford medical center. In the mean time leg twiching increased as did random twitching all over body. No loss of strength just loss of sanity. Stanford doc. also found very brisk reflexes but said they were bilateral and because no loss of strength, normal muscle tone, and normal EMG, was obviously BFS. He sent me out for counseling, gave me low dose valium and 3 mos of Zoloft.
Twitching went away until May 04 and returned with a vengence, also began to feel cramping in arches of feet as I fell asleep, a weird quiver in the Jaw when I woke up, patchy tingling in small spots on my legs, and a shaking quiver of my arms and upper body. No loss of strength. Ran 4 miles 5X week and had increased to 2 sets of 50 pushups, and tested myself every day by walking heel/toe for 20 yards.

Went back to Stanford Neurologist who just shook his head (Wife was with me which I regret) he said I was stressed needed to see a shrink and uped the Vallium dose and gave me a 3 month prescription. He suggested that I quit my job as he thought it was a source of stress. Twitching disappeared completely.

Vallium ran out (July 04) and within 2 months twitching returned worse then ever. Random over body but relatively constant in legs. Jaw quiver and buzzing sensation now right as I fall asleep and when I wake up. Cramps in calves and arches when I fall asleep 3-4 time a week. Sometimes visible twich in tricep or thigh will last 2 days and then magically disappear.

To this day I have no loss of strength as I continue to run, but think I am just on the verge of getting weaker thinking it will strike me next week or next month. Wife thinks I am psycho but I cant shake the ALS thing because of my dad.

Its now been 1 year 4 months since noticable leg twitching,- is it possible ALS is just around the corner?

TMcMahon,

First let me say welcome to the group, sorry you have to be here. Then let me say that your story sounds exactly like hundreds that I've read over the past 18 months. The mental anguish associated with BFS is far worse than the physical sxs, especially the fear of als. I would have to imagine that since your father suffered from als that that fear would be expected in your case. The very good news is three different neuro's have told me personally that BFS doesn't lead to als, and hundreds of other members have stated that there docs have told them the same thing. Since you have had a normal emg you don't have als. Is als around the corner? Could be for any of us, but it has nothing to do with the twitching we are currently suffering from. Finally, the fact that you have started twitching and stopped a couple of times is absolute proof that you don't have als. ALS doesn't come and go, it comes and stays until the nerves/muscles die. Generally, once the twitching kicks in, the disease has already taken it's toll on the nerves/muscles and it would be apparent on emg and physically. That said, most here still struggle with the anxiety you talk about. I know i do.

Take care,

Gary

Tim:

I misunderstood, thinking THE late 80's were HIS late 80's - sorry. And of course sorry that you lost your Dad at a relatively young age. The older we get, the younger 72 seems.

One good thing about our BFS, if I may say so, is that it is a wake-up call for many of us, if a small one. Once we've gotten past the gut-wrenching fear that we really do have a swiftly illness, most of us have at least occasional periods where we really are grateful to be able to whine about the little stuff, where we have a renewed appreciation of all we DO have. I get little moments here & there - had one recently while walking to my office building on a chilly morning. Just glad I can put one foot in front of the other.

Check in with us. Always someone here who can reassure you.

--alyLeoNCali

Again, thanks for the words of encouragement. The mind works in mysterious ways even in the face of hard cold facts.

I guess my angst was/is increased when I read the back and forth comments comparing the Mayo study to the Canadian/English study (6.7% w/ initial fasiculations only, developed ALS) and one of the concluding remarks concerned "caution" in diagnosing BFS for those presenting with only fasiculations and a family history of ALS- which is me...

Hi -
Where did you find this study ?
What does it tell exactly ?
F.

The studies are discussed in detail between the members here over the last 2 years. The hallmark study was done at the Mayo Clinic which found fasciculations w/ clean emg means no chance of ALS. A second study out of either Canada or England found a 6.7% incidence in the development of ALS w/ claimed presenting symptom of twitching. The criticism of this study was that there was no mention by the researchers of initial abnormal emg findings on this 6.7% nor whther they had other clinical signs at time of initial exam. You can find all the discussions by starting your search w/"Mayo".

For those who responded to this thread ... Just want to say that it's nice to see so many well written & intelligent responses. This thread is full of helpful data as well as some great non-scientific comments. I also am glad no one is "stomping off and leaving the boards" because they didn't like the responses they got. Such a rational group !!! Too bad we couldn't apply that rationality to our BFS symptoms. Have a great weekend!!

Tmac,

Hey fear is natural and OK. Remember though--what does fear do? Turns on the adrenals. Can you say nerve hyperexcitability? I bet you've already got enough of that going on.

I can't totally shake mine either. But today would be the best of all days to nip this problem in the bud and not let it take root and turn into a multi-year mental disposition like it has for me. Your dad's having had it of course doesn't help one bit.

Good luck. Consider seeing a shrink, I would if I had the cash.

On the issue of a shrink (who was referred by my neurologist) as I told _BoyyDavo_Man in a private message yesterday -I was seeing a "stress counselor" of some notoriety(ie TV/radio) and after several visits he told me to look at my twitches every day, give them a name, and talk to them. So I named them "Fred" and when I talked to them they didnt seem to pay any attention to me so I said f... this, and now laugh about "Fred" and my very expensive counselor. I think I will stick to a glass of wine, vitamins, Gatorade, and just dealing with it.

Tim