Hi, I'm Julie. I came across your thread and was hoping I could ask you a couple questions about your nerve testing and vasculitic neuropathy. I have lupus and many nerve problems from PN to now bodywide compression systems..carpal, tarpal, ulnar and radial, also multiple cranial neuropathies, tn, on and gn. Should I ask for a nerve biopsy and ANCA? Will a nerve biopsy always show the vasculitis if it is there? What findings did you have that made your neurologist sure you had vasculitis? Thanks, Julie
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Originally Posted by tjb48629
I will tell you that my board certified neurologist ran every test there is to reach a diagnosis. She was 95% sure I had vasculitis based on all the findings. She suggested that I get a nerve biopsy done as that will tell us exactly what type of neuropathy I have. I had the biopsy done and it was confirmed I had vasculitis. I will caution you, I was on high doses of prednisone and because of that I ended up with an infection at the incision sight which caused me to be hospitalized for 2 days where I received high doses of antibiotics. I do have severe nerve pain at the incision sight which I take medication for 4 times a day. They explained to me that your nerve is like an electrical wire that has electricity running through it and you cut the wire. The electricity that is running through the wire just goes wherever because it is cut. The doctor said the nerve pain may never go away but there is no way to know. Even with the problems I had I would recommend the nerve biopsy so they know exactly what to treat you for. I currently receive IVIG as nothing else has worked to this point. It seems to be helping but have only had 2 treatments so far. I am hoping for the best. Good luck to you.
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