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So im not sure i have this wegeners but i have nerve pain in feet legs and now hands. Have had the pain in lower for last three months been on gabapebtin now its lead to hands my fingers twitch and im having weakness. Can barely walk with a cane. Two weeks ago was admitted twice to hospital for breathing issues. Found grouznd glass on ct being traeted with nebulizer and prednisone. Thwy not sure what iit is. Work could careless they dont believe me. I been out sicj.My hands are getting red now and i have a rash on both arms. Anyone experience this oh i go over my thirf nerve test today and blood work with doc he mentioned other day I may have it wegeners help! im 42 yrs old i feel 82 I know im starting to have tinglin in face. im scared

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  • Posted

    It certainly sounds like it could be wegeners.  The lung involvment is also a symptom.  You need an ANCA blood test and possibly a lung biopsy.  Have you had lung problems before?   Sometimes it takes a while to get this diagnosed.  It can mimic other auto immune diseases.  The thing is, you have to be active in your health.  Push for testing to get a diagnosis  Don't let up or give up.  If you get a Wegeners diagnosis you can start meds and hopefully start to feel better.  Its hard when you know something is wrong and it seems like no one believes you or how bad it is until it has a name.   You will also need a kidney function blood test.  Also try to get a referral to see a Rhumatologist.  Good Luck and keep us posted.

     

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    • Posted

      Absolutely right .You MUST find a rheumatologist who has experience of Wegeners (use Google) General doctors may see one case of Wegeners in their entire career - that's why diagnosis is so hard.

      Good luck!!!!

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    • Posted

      I don't have a rhumatologist as not many joints are affected and I've not been offered one. So I'm not sure everyone has to have one. We are all unique in our own special way.

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