information on a familial form of inclusion body myositis -- Hereditary Inclusion Body Myopathy (IBM2) Forum

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Date Posted: 23:17:40 03/13/03 Thu
Author: Pat Dudley
Subject: information on a familial form of inclusion body myositis

Dr. Darvish - Could you give me contact information about individuals doing research into a familial form of Inclusion Body Myositis? My father in law and his brother both had IBM. My husband has recently had some symptoms of dysphagia which I understand can be an early sign of IBM. So far, he doesn't have muscle weakness, but he has begun complaining of tired ankles, feet, etc. His paternal grandparents did not appear to have IBM. The grandfather died in his 80's of cancer. The granmother died at the age of 63 of complications of diabetes. I guess she could have had IBM, but died before it became very apparent. Is there any advantage at all of an early diagnosis of IBM? My husband had by pass surgery several years ago and is doing fine. I don't know if stressing him out about a disease that has no cure would be of any benefit. He hasn't shown any interest in trying to find out what's causing the dysphagia. It's not bad ...mostly just excessive throat clearing after he's completed a meal. He has had a barium swallow test which indicated no problems. He hasn't had a motility test.I'm the one who is most concerned. My daughter recently married and is thinking about starting a family. Suddenly, I'm very concernd about the genetics of this disease. Thank you for your help. Pat Dudley

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