Amyloidosis or CIDP

    • Anonymous
      September 23, 2008 at 10:49 am

      Well, my previous neurologist had diagnosed m e with CIDP last Sept 07. He tried ivIG, High doses of Prednisone and Plasma Pheresis – all with negative results – no improvement at all and just getting worse. Now pretty much reduced to a walker full time. Feeling tired all the time, can hardly feel anything with hands and feet.
      He handed me off to a neuromuscular specialist at the Hershey Medical Center – part of Penn State University – this new doctor seems to think it may be amyloidosis – he said it’s very difficult to diagnose – he wants to look back on records from my previous hospital stay and also the numbers from my lumbar puncture. My previous neuro just advised him that the levels were high, but gave no numbers.
      So, now it’s a waiting game. Has anyone else experienced this or had their neurologist think that?
      here are the symptoms of amyloidosis – I have all but the swollen tongue, shortness of breath and irregular heart beat.

       Swelling of your ankles and legs
       Weakness
       Weight loss
       Shortness of breath
       Numbness or tingling in your hands or feet
       Diarrhea
       Severe fatigue
       An enlarged tongue (macroglossia)
       Skin changes
       An irregular heartbeat
       Difficulty swallowing

    • September 23, 2008 at 11:35 am

      Try to private message JoanF, she is going through the same thing. Good luck!
      Dawn Kevies mom