Re: Transverse Myelitis -- A spectrum of Neurologic Disorders
Errol White (eamjwhite(AT)bigpond.com)
Thu, 15 Oct 1998 21:40:38 -0700
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Thanks Chris for the very informative and
interesting message, I must agree with JanH that is good to see a doctor with a
good understanding as yours. I have been very lucky that my General
Practitioner here in Queensland Australia is keen to read all I give him re the
dreaded TM, His partner in the practice, David Brand, is this year the president
of the Australian Medical Association and I occasionally see him if my GP is not
on duty. Thanks again Chris.
Regards from Errol in Queensland Australia
Hello
all again,
Decided to put forth my thoughts
once again. I put forth my story last year, almost a year to the
day. Last year I spent Canadian Thanksgiving in the hospital with
severe disability while my family gathered for dinner. Today I will be
able to join them. If you recall I am the Canadian physician who
actually treats cancer of the nervous system. To my dismay, I was
struck with this horrible illness last fall. I'll update my progress
and share with you what I have learned about this rare disorder over the
past year. I am fortunate that I am able to read and understand the
medical literature, however, let me reassure you that there is little useful
to be gained from this endeavour at present.
I was hemiplegic for about a week then strength in my left leg slowly
improved. Intermittent neck and back pain, as well as diffuse muscle
spasms have been the bane of my existence this past year. I exercised
in the fall and was able to return to work in January. It was a very
busy year in the cancer clinic. By July I had become exhausted and
reduced my hours. Repeat MRI studies showed a small syrinx (a fluid
filled cavitity in the spinal cord....possible a result of inflammation from
last fall). Unfortunately I have had two 'mini-relapses'. The
most severe was last week. I had a recurrence of pain, leg weakness,
urinary frequency, and autonomic disturbance (rapid heart rate, nausea,
temperature fluctuations). I am on Prednisone -- I believe it has
helped me considerably. I am about to have another MRI and also see a
rheumatologist to rule out lupus. I have seen another neurologist who
basically confirmed the initial diagnosis of TM or acute post-viral
encephalomyelitis. I am off work again which is most distressing after
spending 12 years of post-graduate training....I hate going to work when my
patients look better than I (though I should be grateful for that
also!). Hopefully will be back part-time within a week or
two.
Medications I have tried:
Tylenol #3, Valium 2.5 mg, Dantrolene, Baclofen
Medications that work for me: Tylenol#3, Valium 2.5
mg
Medication that I can't tolerate:
Dantrolene (it caused generalized weakness to the point I could barely
walk)
First, I would be interested to know
if anyone has had a syrinx or syringomyelia associated with the
condition?
Second, have others had periods
of 'recurrences' without progression to MS. Obviously, for me, this is
the next question to address...the more relapses, I have the more this
diagnosis would apply.
With respect to
TM: I am not surprised that many neurologists have not treated this
condition....it is very rare at about 1 per million. MS is much more
common. What is more important than your neurologist having treated
someone else with the condition is that he/she understands the condition,
the disability, its profound impact on the quality of life, and how to
manage symptoms. There are no right or wrong answers to the use of
steroids...it is quite reasonable for short duration therapy in moderate to
severe cases....chronic use would not be a good idea in the absence of good
medical evidence. It's use in MS is proven and it is reasonable to
extrapolate it's use for other demyelinating conditions. It is
important your neurologist evaluate you for other associated conditions that
may exacerbate your condition like collagen vascular disease (lupus) or
immune disorders.
It is clear from reading
the individual stories in this newsgroup that ATM represents a heterogenous
group of focal demyelinating spinal cord disease. It is unlike MS in
that symptoms/signs remain confined to the initial site of
inflammation/demyelination. These may abate and worsen -- some have
identified triggers such as vigourous activity, viral illness, change in
weather etc. We know little about why people get this disorder (apart
from a misfiring of the immune system) nor do we understand why some people
are more severely disabled than others. Hopefully new agents that can
modify immune response without turning off the body's defense to infection
will provide more effective treatment. No, I don't know if any such
agents are being tested at present (.
ATM
may be the first sign of MS however, overall, it would seem the likelihood
of progression to MS is low for most.
Best
of luck to all of you,
Chris Leighton
MD
Windsor, Ontario CANADA