My post a while back

[jl73]

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 Gullian Barre. I remember not being able to walk, too weak to move, basically this went on for months. Anyhow, I also developed a nasty case of B12 deficiency, it got so bad it affected my heart rhythm and caused nerve damage and showed up as muscle wasting/spasticity/etc.
The big thing now for me is immune system. I've got my allergies under control with shots. Before whenever I got a flare up, my legs hurt. Whenever I got sick, I became too weak too move--just like I remember in my youth!
I donate blood plasma and platelets almost every week now. Side benefit. It strips antibodies off blood. It's been amazing. I haven't got the severe leg weakness or pain in quite a while. Before it was almost every other day. It was so bad I'd simply cry.
My feet still burn esp in bed. I still get eye weakness on one side, double vision. I can't feel my left thigh. If I take drugs that are known to affect nerve function, it affects my bladder function!
I managed to get off Lithium, all depression drugs, steroids, allergy meds even, and a few other pain things.
I still get myoclonic jerks. I don't know why. I'm watching my iron levels, b12. But, I feel as though with this new regimen, I'm so much better now.
So I guess I post because the good news is I'm improved enough that I don't feel like I'm straining every second to push around a half dead body and I have some answers. 8 years ago they wanted me in a nursing home and talked to me about taking rilutek, what machines I wanted to be on... The pain/weirdness is there but down to a level I can work with. The few hours I donate each week on the machines, while unpleasant and a little painful, is also helping others.

Wanted to share a little positive news.

 

[Bad Balance]

Why would you think you have PLS?

 

[jl73]

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 say anything then walk out. I could tell he had been crying.
The first one said I had nerve damage. Then next appt said it was a lot like MS. Then said cranial nerves (some numbers, I forget which ones) were damaged. Then nurse said the body doesn't do well without intact nervous system, it just "decays" in her opinion. Then they talked about what machines I wanted to be on, because "Without a will, I'd get everything. I was going to get horrible disabled."
At first, the nurse said I needed to be in this super expensive drug (that they said weren't sure did anything) and provided some forms for an agency to help pay for it.
But then they started to change their discussions when I pretty much stayed the same for a long time.
I had brain surgery about 5 years ago. Yeah, pretty gruesome stuff. The brain surgeon said my brain looked great though. But I had a lot of probs walking after that for a while. The nerve they worked on controlled legs. He asked how I knew that, I said I could tell by side effects. That was when they noticed I had pernicious anemia, not just low b12.