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Date Posted: 21:05:29 03/26/02 Tue
Author: Barbara Sheahan
Subject: Re: HIBM 2 OR 1
In reply to: D Darvish, MD 's message, "Re: HIBM 2 OR 1" on 16:11:32 07/01/00 Sat

>> Dears sirs!
>> what is the difference between heridatary
>> in.bo.myositis and familial ib myositis, I want to
>> write you more, I don't know if you receive my mail?
>
>Dear Benhassen,
>
>IBM1 is Inclusion Body Myositis, a immune related
>muscle waisting disorder which seems to affect people
>sporadically and its one of the most common muscle
>disorders among people of age 55 and over.
>
>IBM2 is another name for Hereditary Inclusion Body
>Myopathy, recessive type, which seems to follow
>hereditary recessive inheritance pattern (i.e. two
>genes are needed to develop the disorder, and there
>may be many people who are healthy, but are carriers
>for the defective gene). It seems to affect people
>ages 20 and above, and its one of the most common
>muscle disorders among people of Iranian & Jewish
>Heritage.

My sister, brother and myself have recently been diagnosed with IBM2. Our ages are 62, 59 & 60, however we all are showing different symptoms. My brother, the youngest, was diagnosed first (about 2 years ago) has lost almost all muscle in his legs (which are extremely thin). My sister, the eldest) has very weak legs, but they are appropriate in size. They both wear braces. I am in the middle and my legs, although weak, have not yet shown signs of atrophy. However, I do experience a lot of pain in the lower part of my left leg (around the ankle, shin, and side. Coincidently that is where the muscle was taken from for the biopsy. Neither my brother or sister have any pain. Are there different types of this disease? Is it similiar to muscle dystrophy?

We would all appreciate any info that you can give us about this disease.

FYI we have one other sister who has no signs or symptoms.

Thank you in advance.

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