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Member
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
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Member
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
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familiar
Deja Vu, your symptoms and course sound very familiar to me. I used to be on a forum with women who had silicone breast implants, and they developed connective tissue diseases which took many different forms, as yours does.
But I don't really understand your decision-making. It's so unusual for doctors to recommend plasmapheresis that I'd think they see a good chance of response to it, and a good chance of disabling illness without it. So if I were in your shoes, I know I'd get the procedure, happy to have bad antibodies removed from my system.
Antiphosphlipid syndrome can affect the cns and pns. I'm not sure labelling the spinal arthritis spondyloarthopathy adds anything (I've been told that, too, and it didn't change things, plus I think it was wrong), but knowing about the antibodies is awfully important.
I'm glad you have doctors who are willing to take you very seriously and be aggressive.
In terms of healing, there's a lot to be gained from all the advice here on supplements and nutrition. But anything which powers your mitochondria is important--they have to do a lot of work to regrow long axons. So, carnitine, in whatever form you choose, and CoQ10 can help; carnitine being the more important of the two.
Sorry you are going through so much.
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LizaJane
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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