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Date Posted: 10:21:46 05/19/00 Fri
Author: Cher
Subject: Re: Inclusion Body Myopathy
In reply to: Bobak K. Darvish, MD 's message, "Re: Inclusion Body Myopathy" on 21:59:13 05/06/00 Sat

> 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

Thank you for your response. I did e-mail Dr. Daniel Darvish back after his initial response to me, but never received a reply, so I don't know if he actually received it or not. Thanks again. Cher
> 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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