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Originally Posted by northerngal
nope, I'm not in the UK---both of the doctors that prescribed my IVIG were in the Boston, MA (US) area. They both felt felt that IVIG was the safest because it does not suppress the immune system. I got the same speech from both that suppressing the immune system could possibly lead to cancer or other unwanted ailments.
Truthfully......I would have used the immune suppressants in a heart beat if at least one of them told me it would alleviate this neuropathy. They are still not out of the question if it starts progressing. I sometimes even want to try one now to see if suppressing my immune system would help me regain strength/function and feel better.. I know they would not help with the actual healing process of the nerves. But I just wonder because, if my "overactive" immune system caused this in the first place---maybe I would feel better if it was suppressed??? BTW....no 52 is not considered "older aged" (caught that in your earlier question---and I am 51!!! lol)
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Whew that's s relief re 52 because I'm only just ready to go for new life, renewed ambition as an artist etc now youngest son is about to leave for university. These references to ageing were starting to depress me as much as the rest!
I have been sufficiently alarmed by the inflammatory process over the last four or more years that I was willing to try anything. In my heart I know that my neuropathic symptoms are inflammatory/ immune mediated because of the way the RA showed up so dramatically and manifestly. I will not accept that this is idiopathic and will keep investigating and asking others to investigate because I feel that there is something I or doctors could be giving me to halt this process.
However in guessing that your neuropathy has been confirmed as immune mediated and this is how you were offered IVIG? I am fairly sure that in this present health area I won't qualify for this treatment. Only those with proven immune mediated inflammatory polymeuropathies qualify and mine falls under rheumatic so the neurologist is highly unlikely to let this problem fall into the beleaguered neurology department's responsibility. I will ask but Ivig is very expensive and a scare resource. Maybe when I move to a more forward thinking area it can become an option but I need to find some energy to relocate first - even cleaning up the kitchen earlier has led me back to my bed foofed!
Do you ever get this kind of pain where it is as if something is gripping you everywhere? So if you move you might explode like you have a bomb attached? So you stay extremely still in its vice like grip in the hope that it will lift itself and let you breathe again normally?
I don't know anymore if I'm imagining this or if this corresponds with others experience of neuropathic pain. It becomes like a wetsuit of pain in the night and includes my jaw so I feel I can't even cry out. It's almost exquisite in its awfulness. In fact in going to ask this as a separate question/ post so please respond if you would like to. In the context of this post I'm not sure if it will help to describe it in this way to my neurologist on Wednesday or if I'm being too descriptive and pain is just described as sharp, dull etc?