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Posts: 1
Joined: Feb 23, 2013

inclusion body myositis

Posted by @splinte, Feb 23, 2013

suffering from IBM, does anyone have a good cure?



Posts: 2
Joined: Feb 24, 2013
Posted by @dk, Feb 24, 2013

My IBM diagnosis was about 4 years ago. My sister was also diagnosed about 8 years ago. Both of us have gradually lost muscle strength. My sister cannot walk at all while I have to use a cane or a walker. Our neurologists tried methotrexate for some time but there was no benefit. Same for therapies. I have joined a support group at where fellow sufferers compare notes. One surprising thing is that while most authoritative write-ups talk of swallowing difficulties with IBM, both my sister and I do not have that problem>
The most discouraging thing is that most doctors ( even some neurologists) have never heard of this illness! Even the NIH website has no update of its summary for IBM for more than a year. The magazine, Neurology Now, has hardly any mention of IBM. Even Mayo index did not help me. In short, the general apathy for this illness adds to the physical misery. My short answer to the question:: No cure to my knowledge.

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