muscular dystrophy diagnosis -- Hereditary Inclusion Body Myopathy (IBM2) Forum

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Date Posted: 11:13:14 02/07/04 Sat
Author: trish
Subject: muscular dystrophy diagnosis

hi there i was diagnosed with md as a small child. it occurs only in the women of my family mom, me and sis and neice. my sis and i still walk. we have not been able to find a doc to diagnos us inconclusively. i was just re-tested 5 years ago when i was pregnant and told they have never seen anything like this especially cause it seems to be only the girls. i am 38 now and my sister just developed eukemia and i am donating marrow. however we both have kids and are desperaate to find someone who can tell us what we have as getting any kind of treatment is hard cause docs are afraid of us as our files say unknown so usually they tell us take tylenon cause they are afraid to recommend anything just in case its harmful to us. i have had tendon lengthing surgery at 11, bad balance, trouble climbimg stairs, foot drop, fall easily and trouble getting up if i bend to get anything. i usually have to lean to push myself up from that position. i have joint pain and tire easily i presently have a scooter as outdoor walking is risky with the amount of times i fall. inside is much better and i get around on my own. i am of canadian descent and my mom is the first to show md that we know of.if anyone out there has similarities please let me know were desperate. there has to be something the docs here are missing. unless we are not human that is lol

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