Sharon
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In Reply to Karen Deckard on June 17, 1997 at 18:50:19:
: I was diagnosed in May 1996 with acute Transverse Myelitis. I have a
: brother and sister diagnosed with it also. All 3 within a 2 1/2 year
: period. We have had MRI's, spinal taps, etc. to rule out MS. We all have
: residual numbness and pain of varying degrees. Two of us have pain in
: chest wall, axilla, and back. The other has pain in legs. Do you see
: cases that appear to be familial? Do you know of any case studies of
: etiology being done? I suspect a genetic autoimmune cause for us.
: What pain control methods work best? Among us we use a TENS, Tylenol #4,
: and Duragesic patches. My sister ia allergic to codeine, Demerol,
: and Duragesic. We have all been treated by Dr. Robert Taylor of OSU
: Medical Center in Columbus, OH who sees us at Licking Memorial Hospital
: in Newark, OH. We are very confident of his care, but wonder if there
: is anything new to learn. I am an R.N. so you don't necessarily have to
: use lay terms.
: Thank you very much for this opportunity.
: Karen Deckard
: gregdeckard(AT)alink.com
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Dear Karen:
The history you relate is extremely fascinating. Obviously, the nature of
the problem you and your sibs have is undetermined. Thinking about
potential causes: 1) Hereditary spastic paraparesis can be confidently
excluded because the condition is dominantly motor. 2) MS does have some
degree of familial tendency to it. The risk of a sib getting MS is commonly
quoted as being 5%. Familial clustering (of more than two cases) of MS has
been reported, but is distinctly rare. 3) Mitochondrial DNA mutations
(specially LHON - 11778) have been reported to cause MS like illnesses, but
commonly involve the eyes. 4) HTLV-I is a chronic retroviral infection that
causes a myelopathy, and has been described in families. It is, however,
mainly prevelant in some specific geographical areas, and is rare in most
parts of the US. 5) Other infections, such as Lyme, herpesviruses, prion,
etc are plausible, but would be conjectural. 6) A familial systemic
autoimmune condition, based on shared HLA alleles, is possible, but rare.
7) The syndrome does not seem to fit commonly seen nutritional or toxic
conditions.
No, we do not commonly see your problem - it is practically reportable.
I do not know the best answer to the pain problems you and your sibs suffer
from. The question is best addressed to a pain specialist.
OSU is a very reputed institution with an excellent neurology department,
and I am sure you and your sibs get excellent care there.
If, however, you do want another opinion, we would be very happy to see you
here at the Cleveland Clinic. Your problem would be best addressed at the
Mellen Center (affiliated to the neurology department here) which deals
with MS and related disorders. The number you might want to call up for
appointments is (800) 223-2273.
This information is provided for general medical educational purposes only.
Please consult your physician for diagnostic and treatment options of your
specific medical condition.