Discussions By Condition: Muscle conditions

my muscle/nerves are all messed up

Posted In: Muscle conditions 1 Replies
  • Posted By: Anonymous
  • October 16, 2014
  • 03:14 AM

This began about 2 yrs back. I went to a rheum and there were no tests done. I was put on prednisone for
"fibro". I took this for a while and it went away. post 2 cervical spine surgeries I was not feeling good. very weak and tired. went back to rheum, we did some tests. I had CVID, and needed monthly transfusions of IVIG. I was not on enough to be helpful at avoiding infections and right after I had the vaccine to test and first infusion, developed what now is peripheral neuro. every day is ***l. I never know how I will feel when I get out of bed. somedays it hurts in my gut. (diagnosed with chronic gastritis) it hurts in my head. (failed sinus surgery and ton of infections: bacterial, fungal, etc.) it hurts in my back (2 operations) my legs and arms burn like they are on fire. Its pretty much made me a cripple who can't work and I am getting afraid to go out because I never know when I will have another nerve attack. the attacks leave me crying on the bed. I have seen a ton of docs, even mayo. No-one can figure out what is wrong. Docs have walked away from me. I am scared and lonely. I depend on a pain doc to keep me from jumping out the window. Its horrible, even had to stop working. If anyone out there has a clue to what this may be and please god if there is some way to fix this, let me know. I want to be around for my daughters wedding, but living life on the sofa with heating pads, ice packs and water is getting old. Please help if you can or know ANY decent neuro in chicago area. or rheum. I think due to the CVID, the tests they did for an auto-immune disease came out negative, but may have been positive. I want my life back, and am getting desperate for help. thank you.

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1 Replies:

  • Hi my name is sue..I was just recently diagnosed with polymyositis..a condition where the immune system attacks the muscles..that he the symptoms sound much the same as yours with a few extra..this disease is easy to detect by having a CK blood test...I strongly advise you to have this done as the symptoms of this disease only get worse...god luck and plz let me know the results..I'm told this is a very rare condition!::::take care
    Sue1964 1 Replies
    • October 28, 2014
    • 11:42 AM
    • 0
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