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Originally Posted by Spectrum
I do see your post above. It sounds like you're in the same boat as us. It's truly unbelievable. It's very hard to have hope when you see no improvment and your doctors can't give you even a short or medium term prognosis. Mine were confident early on that all of this would dissipate, because of the way it came on so quickly. They thought it was probably the unfortunate result of some toxic reaction to platelet rich plasma and prolotherapy injections I was receiving for some back issues, and that it would likely resolve. Now it's about a year later, and symptoms haven't resolved and are probably worse. And as you referenced, it's a very cruel thing because you're going down two parallel tracks that no one else is aware of unless you tell them. On one track, your life has basically been ruined, and that's not an exaggeration. On the other track, you look relatively normal and have to try to act "normal" and continue on with business as usual while you're in agony every minute. That dichotomy is enough to drive you nuts, and I think at some point those two lines intersect and you have to leave your job, etc.
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Hi, again... You mentioned that you were receiving "platelet rich plasma". Did they run blood tests for all viruses that could possibly have been introduced via the blood therapy? Hep C, B and parvo virus b19? The virus I had shortly before my neuropathy started was parvo virus b19... though it is a very unusual manifestation of the virus. Usually, it's more extreme joint and muscle pain, though I have that, too. Yes, nerve, muscle and joint pain... I'm quite a mess. I mention it because it is a virus that can harbor in the bone marrow and does have something to do with blood platelets (though I'm not sure exactly what). I don't want to send you on a wild goose chase, but it is a thought. For a year my neuropathy was labeled "idiopathic" but I relentlessly brought up the parvo virus b19 and asked for retesting a year and a half later because I just had such a hard time accepting that the virus and the sudden onset of neuropathy couldn't be related. I also had severe gastrointestinal problems and sudden significant weight loss, so for a while a paraneoplastic syndrome was being considered and tested for.
I am taking gabapentin and have recently added 10 mg. nortriptyline... hate taking it all. It makes me feel like a zombie and really only takes the edge off the pain. But, otherwise, I'd be incapacitated and I need to participate in life still! Though, I've gone from a very positive, happy person... not without struggles, but certainly NOTHING like this... to just managing to "get through" the basic responsibilities that I have.
I'll be sure to check this site a little more often to get your updates and to share.