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I saw somebody with a sign on a walker that said "made you look" but def not meant to be put on a walker, so it was funny. It really took the edge off. Michael j Fox said he always tells jokes and after that people really quickly treat him like everyone else again. I think people get...

Because that's what the nurses told me the doctors thought it was-without actually being super specific. Less than 500 people might have this kind of nerve damage (in US) they said. They actually dribbled out the information a few pieces at a time over a year. One doc came in, wouldn't really...

The official thing I got (when they first thought I had ALS) from the docs they said they didn't have enough data to know if the drug did anything. They thought it might extend the survivability curve by 6 months-push it back, but that wasn't certain. They didn't know if I would think the...

I posted on here a while back. It got moved to the fibro area I guess. Well, I'm in a much better place now. If I keep myself healthy, I don't seem to have too many probs. When I get sick, that's the big prob. I had kawasaki when I was young. Some speculation I also had complications like...

I asked my allergist about this and she said both antihistamines and anti-depressants affect nerve function.

Arch Neurol -- A Locus for Primary Lateral Sclerosis on Chromosome 4ptel-4p16.1, March 2008, Valdmanis et al. 65 (3): 383 Possible genetic basis for PLS identified in one family in Quebec. From Centre Hospitalier Affilié Universitaire de Québec–Enfant-Jésus

It's pretty easy to freak out when you start reading. It's human nature to want an answer. The docs thought I had ALS and pretty much wanted me to figure out what machines I wanted to be on. Well, that was some years ago. I'm still going. Maybe not strong, but going. I have other really...

Hi, Ok. I've noticed that I've had hyperreflexia on one side of my body much more than the other. Also weakness. Anyone else get this? Next thing, how do you explain to people that something is wrong if you don't show obvious signs? I'm young. Still consider myself in good enough shape. I...

Hi, I have tried prednisone, and a few other IM drugs. I cannot take most drugs b/c of the stuff I am taking will interfere. I also have a pacemaker, so no MRI's. (I can still have CAT and PET scans). I will check out the blood tests. I already have one autoimmune system disorder + bad...

Well, that's what they said, I would never know what it was, but they will after an autopsy. And they said I might need a wheelchair. I hate vagueness. My severe weakness comes after getting sick, but then goes away after three or four days. I still have to work harder than I should on normal...