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Date Posted: 21:59:13 05/06/00 Sat
Author: Bobak K. Darvish, MD
Subject: Re: Inclusion Body Myopathy
In reply to: Daniel Darvish, MD 's message, "Re: Inclusion Body Myopathy" on 23:26:37 04/10/00 Mon

Dear Cher,
I have included my e-mail so you can correspond with me directly if you would like; You may also contact me directly by phone (818) 618-4141 or ARM Organizitaion by phone (800) 276-2000. I can give you more useful information if you contact me directly, but here goes the answer to your question:

The "Inclusion Body" part of the nomenclature only refers to the fact that these diseases look alike histologically under a light microscope.

Inclusion Body MYOSITIS is an inflammatory disease of the muscle, where white blood cells infiltrate the muslce and through mechanisms that are not well understood create muscle weakness and disease. The sporadic form of this disease is characterized by onset late in life (50-70 years old) and early involvement of the quadriceps muscle. There are FAMILIAL forms of this disease (often confused with HIBM in the literature, but really quite different) that have similar characteristics clinically, but run in families. Their muscle biopsies still have a predominance of inflammation as in the sporadic form of Inclusion Body Myositis.

The Inclusion Body MYOPATHIES (Myopathy and NOT Myositis because there is no significant inflammation in the muscle) are a heterogeneous group of muscle disorders of which HIBM is one. HIBM is the subject of our website. It is characterized by EARLY onset in life (20-40 years old) and relative sparing of the quadriceps muscle. The "hereditary" part of the name indicates that it is a genetically predetermined disease. HIBM has been linked to chromosome 9 and the search for the causative gene is well underway.

From your biopsy description, it seems LIKELY that you have HIBM, but again, we need to know your age, ethnicity, clinical disease course, along with other info including blood testing to make sure, to say that this is HIBM for certain. Please get in touch with us if you have not done so already.

Yours,
Bobak K. Darvish, MD
Rehabilitation Medicine
e-mail: bkdarvish@yahoo.com
phone: (818) 618-4141



> > I just received a copy of the "second opinion" my
> > neurologist set up. He sent my muscle biopsy slides
> > and info. to the Mayo Clinic. The "diagnosis"
> states:
> > "Inclusion Body Myopathy" and "The patient's age and
> > absence of inflammation point to the diagnosis of
> > familial inclusion body myopathy rather than
> inclusion
> > body myositis." I was wondering, are Familial
> > Inclusion Body Myopathy, Inclusion Body Myopathy, and
> > Hereditary Inclusion Body Myopathy all the same
> thing?
> > Every time I do a web search for just Inclusion Body
> > Myopathy I come up with HIBM. Thanks. Thanks also
> > for your answer to my question about the
> antioxidents,
> > I have started taking them!
>
> Dear Cher,
> What is your background? tell me more about yourself.
> You can also email me if you wish.
>
> I am very much intereted in obtaining DNA sample from
> you, which can be obtained with a routine blood
> sample. We can send your sample to all the
> laboratories throughout the world who are actively
> resesarching vacuolar myopathies. With your help, we
> can find out what causes these vacuoles in the
> muscles, and what causes the muscle cell death, and
> maybe stop the process. Please see the research
> section. Also, if you don't mind, I would like to
> contact your doctor/neurologist.
>
> sincerely Yours,
> daniel

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