tbradford at home.com writes:
> I have read several of your readers' letters on this subject and would
> like more information. My mother passed away 5 years ago from this
> disease.
We're in a similar position.
My mother has had polymyositis for 15 years and her state is now
slowly becoming critical (she has to sleep with a ventilator -
a machine that helps her breathe). Although I'm not a medical
doctor I've spent many hours in the medical library reading
about this disease, and I'll try to answer some of your questions.
First, you asked about references on the net. There is a mysitis society
in the States that has an internet site (www.myositis.org), there
you can find some general information about the disease etc.
If you want more scientific things I recommend that make a
search in medline (you can find it on the net at for example
http://www.avicenna.com , http://biomednet.com or at the closest
medical library). If you search for example on "polymyositis and
hereditary" I'm sure you'll get a bunch of references on this.
Then you can order the articles or find them at a medical library.
> 1. Most important - is this hereditary
I don't think this has been clearly proven, but there is a
suspicion that there is an hereditary risk and that it is
larger from female to female.
> sometimes can't list the weight of my arms without discomfort.
This is exactly how the disease started for my mother - pain in
an elbow and then in a wrist...
> My doctor ran blood tests and said they came out negative for
> any muscle infections.
What kind of tests did he do?
Since this might be serious I'll skip the work I really should be
doing now and write down something about this instead.
How to diagnose Polymyositis:
1. Muscle weakness and sometimes pain/tenderness.
2. Muscle biopsy ... (this is the safest test - there are several
PM charateristics. I wont write them down here now since it wont make
much sence to anyone if you arent familiar with medical terms)
3. Tests - elevation in serum och skeletal-muscle enzymes. Your doctor
should check CK and aldolase and prehaps aparte aminotransferase
(AST or SGOT) and alanine aminotransferase (ALT or SGPT) and lactate
dehydrogenase (LDH).
4. Electromyogram - Myogenic change on EMG
This is the basic criteria, but there are several more things
that can be checked (anti-Jo-1, arthritis or arthralgias and fever,
elevated CRP or accelerated ESR, ...).
If you want more information you should check out the "Journal of
Rheumatology, 1995; 22:4" - it contains several papers and an editorial
about how to diagnose and classify PM.
> However, after reading through several articles, it seems you can test
> negative.(have a false negative reading)
It is true that all PM patients do not show all of the above signs.
You should at least discuss this with your doctor and ask if he has
run the above tests. If you want to rule out false serum tests etc
also ask him to have a muscle biopsy done. However, make sure that
it is done by someone familiar with PM - it takes a trained professional
to be able to safely see the signs, and he also probably knows how
to make a "painless" biopsy. If the biopsy is done by a common
surgeon you'll probably get a scare and pain for several weeks
in the wound.
> 2. Also, someone asked if exercise would be good or would it do any
> damage.
Exercise is one important part of the recovery, but first you need
a diagnosis and some kind of treatment (prednisone, other imunosupressants,
IVIG infusions, ...).
Feel free to send me an email if you have any questions and I'll
try to answer them to the best of my ability. I also have a ton
of references to scientific articles about PM, if that interests you.
But be aware that it might not be a good psychological thing to read about
this in medical journals... they aren't exactly hiding the hard facts
about the disease.
I hope this proves out to be a false alarm.
I whish you good luck!
Best Regards,
Jonas
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/-----------------------------------------------------------------------\
Jonas Larsson (jola at tfd.chalmers.se) Dept. of Thermo & Fluid Dynamics
Phone: +46-31-7721388 Chalmers University of Technology
Fax: +46-31-180976 S-412 96 Gothenburg, Sweden
