New to this, a couple questions

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New to this, a couple questions

Postby wrobbie1 on July 16th, 2008, 4:06 pm

Hey all -

A wonderful post by Tom A makes the point that THINKING that you may have ALS should be a syndrome in itself and of itself. This is so true! The Internet has done a lot to radically enhance our quality of life and communication, but one of its downsides is surely that countless people have exposed themselves to the concept of ALS, and have subsequently persuaded themselves that they have it. I'd love to know the ratio of people who have been convinced that they've had ALS to those who have actually had it. The ALS society could do an immense public good by having a prominent link to "What is NOT ALS," and linking, among other things, to this site as a resource. Had they done that, I would not have tortured myself needlessly over the past month, and I'm sure many of you would have been saved from the same trauma.

I won't go through the full saga of my symptoms & experience. Suffice it to say that when I read Arron's post "BFS in a Nutshell" it was both one of the most relieving & humorous things I've ever read. Humorous in that I saw myself in so many of the things that he described (e.g. - conjuring up silly strength tests to somehow self-diagnose if I have ALS, and incurring tiny strains and injuries by doing them, and thereby heightening my anxiety; and thereby heightening my twitching; and thereby heightening the conviction I have ALS...!). More important, it was relieving for the obvious reasons. I had definitively diagnosed myself with ALS four to five times in the past month (I feel like a stock Woody Allen character just saying this!), and reading the "Nutshell" post last night completely dismissed the thought (although I'll probably still take the nerve conduction test I'm slated for in late August just to be safe).

I just have a couple quick questions to post to the group. First, Arron's post talks about BCFS - i.e. BFS accompanied with cramping. He also makes a couple of passing references to numbness. I'd like to know if the following falls into the BFS/BCFS category. Specifically, I've had sporadic feelings in my calves that I'll call a "pulled muscle feeling." Does this qualify as "cramping," and is this BCFS? This isn't a twitching thing, but a small but persistent pain. It feels very much like a slightly-pulled muscle, and it comes and goes (whereas in my experience, actual pulled muscles come and stay, and once they go they stay gone). It started in my right calf, then "spread" to my left calf. This is an issue, because I've had big problems in the last few months with very tender soles on my feet (could THIS be BFS-related...??). My podiatrist has given me orthotics to mend my feet, but they seem to aggravate the calf thing, so I've been reluctant to wear them. But if the calf thing is NOT a pulled muscle, but rather a residual/related element of BFS, then I should probably go ahead & wear the orthotics, because there's not a pulled muscle for them to aggravate. FYI I got really upset & anxious about my feet (this was the first problem that I had - back in April), and it was only in the last couple of weeks that my calves started going off like crazy w/what I now know is BFS (clear anxiety link). I wasn't paying close enough attention to be certain, but I believe that the "pulled muscle feeling" came with or slightly after the BFS.

Next quick question - I had a weird numbness in my left calf yesterday. Very strange - it was NOT on the surface of my skin (where 100% of the numbness I've ever previously experienced has lived), but kind of internal. I don't know how to describe it other than to say like it felt like a weird void in my calf. It was transitory - disappeared after maybe 12 hours. Does this sound like BFS/BCFS?

Last - a couple mentions have been made about doctors not acknowledging the existence/reality of BFS. Is this a universal state of affairs, or was that just the anecdotal experience of the couple of people whose posts that I read who related this situation?

Thanks to all of you - and to Arron, who wrote the magnificent "BFS in a Nutshell" post that described me so clearly that it became obvious that I had BFS and nothing else. Arron in addition to "curing" my ALS, you've also thus far put my BFS into remission, as my calves calmed down 90% by the time I finished reading your post.

Thanks for any info you might have on my three questions,

- wrobbie1 -
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New to this, a couple questions



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