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I was first dx with RA 30 years ago. I opted not to take the meds offered. About 10 years ago I begin noticing leg and arm weakness, which was finally dx'd as IMD 3 years ago. In that time I have gone from a fair amount of independence to a walker and wheelchair. Am very interested in input from others for this horrible disease. All I here from my doctors is "there is no cure, there is no treatment". Apparently, there is very little research going on, as it is very rare, only 8 out of one million. (not worth the money to put into it for so few, I guess)
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I see you posted 1 year ago. I’ve gotten a temporary diagnosis of inclusion body myositis but haven’t yet had the muscle biopsy.
I did get a negative result for Anti-cN-1A(NY5c1A) which I’m told is positive in 80% of IBM cases.
I’d appreciate hearing from anyone with views on IBM and alternative diagnosis give exercise is the only prescription available for IBM that I’m aware.
Currently I’m still walking and doing stairs albeit very carfully
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2 Reactions@mikead Welcome to Mayo Clinic Connect! I’m so glad that you found this site and were able to answer him. I’m going to see if there are any other discussions on IBM or IMD. Please feel free to look at other discussions!