CIDP to IBM

General
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I'm new here and put this in the Blog section, was told it is better in this section, so here it is....

About 1 year ago my legs got real weak and couldn't write my name because of numbness in arms and hands. Diagnosis was CIDP. 5 days of IVIG and 4 weeks in rehab and returned home--very rapid improvement in arms and hands (back about 98%) more slowly in legs, maybe 75%. No further treatment. Only symptom was tired legs but could still do 50-100 stairs a day. Havent fallen down once in a year. Couple of months ago went to another neurologist just to have a follow up. He said I didnt look like his other CIDP patients so did some tests and blood work and ordered a muscle biopsy which came back (2 weeks ago) with IBM diagnosis (haven't had a chance to meet with him since the diagnosis report was given to me). I feel fine except the tired legs (not really pain, just tired). Don't know what the future holds, still walking , climbing stairs, getting out of chairs. I am 76

QUESTION:: looking on the internet I have a hard time telling what is the difference between IBM and PM--mostly they seem to sort it depending on whether you respond to steroids--is this correct?

Many thanks to the people who have already responded to the blog

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Hi. What you are describing doesn't sound like IBM at all. I would ask your neuro how many IBM patients he has had. There are a lot of differences between various types of myositis. IBM doesn't respond to IVIG or steroids or anything. And it gets progressively worse. I think the muscle biopsies look different from type to type too. I have no idea what CIDP is. : ) I have dermatamyositis. I highly recommend tma.org It's the myositis association in America. I have been to their conventions and met IBMers and heard about that disease. There is a book I have about IBM-written by a man who chronicles his journey. Ill see if I can find it. You may need an opinion from a myositis doctor. There are also great Facebook groups-very active for myositis.

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Thanks Legogal, I will look at those sources--as I said I just have the lab report with an IBM diagnosis--haven't yet met with the neurologist (been trying for 2 weeks just to set up an appointment!)

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There is a list of drs on TMAs site. : )