A year ago I had a bout with CIDP, ended up in a wheel chair after falling down several times, couldn't write my name.. 5 days of IVIG and 3 weeks in rehab left hospital in walker. No follow up treatments--a few months later I was walking my dog and climbing stairs, Arms and legs back ABOUT 98%, LEGS ABOUT 75%. Recently went to a neurologist who is supposed to be "the" man around here for CIDP just to check that things were OK. He said "you don't look like my other CIDP patients" did tests (EMG, etc.) and said I don't have CIDP. Did a muscle biopsy which came back with a diagnosis of "Inclusion body myositis", a progressive degenerative muscle disorder. Anyone had similar situation or know more about sIBM (sporadic inclusion body myositis)?
You're very lucky to be seen by someone who really knows CIDP enough to be able to figure out that you don't have it! Inclusion Body Myositis is also very rare. I'm guessing this neurologist sent you to have the muscle biopsy that found it. My first neurologist wanted me to get a muscle biopsy to see if what I had was a muscle disorder rather than nerve disorder, but the "second opinion" neurologist said that would be a waste of time, and what I had was most certainly CIDP. Well now, after 8 months of treatment with IVIG and prednisione without much improvement, I'm starting to think maybe I should've had the muscle biopsy--especially after reading your post! It's so hard to get a true diagnosis because there are so many signs/symptoms with this disorder. It should be called "The Great Mimicker" because it really mimics a lot of other disorders making the true diagnosis very difficult for doctors and very frustrating for those suffering every day with it! .
Bob, it sounds like it's time to join a new community: http://www.myositissupport.org/
Our myositis community has a good number of members who have IBM.