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.
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.