May I tell you my story…This matters to me a great deal this content may
be communicated to others who may be able to take note of, or be able to
identify with it. I feel after considerable reading of
http://www.myelitis.org that I am possibly one of the lucky ones. Any
contacts you could give me as far as medical opinion would be greatly
appreciated as I have had very little assistance in my severely
underresourced country of New Zealand. I am now 49 years old and at 27
experienced an attack of what has recently and freshly been diagnosed as
Multiple Sclerosis. It was acute, sudden and overnight heralded by all the
symptoms I have been reading on your web pages from many people and the
descriptive from Joanne Lynn MD on the main page. I was extremely fit,
participating in Triathlons, surf clubs and football was 6 feet tall at 27.
The details of the first attack are similar so I wont list them as it is
not the point of the exercise, tonight I am elated at having found some
support to 3 years of continual doubt of the most recent diagnosis. This of
course was an emotional culmination for me, and I found that I broke down
with the moment.
I have always within my inner self disputed the fact that it was NOT
Multiple sclerosis but TM.!! (Which was initially diagnosed here in New
Zealand by a Neurologist from United Kingdom in that same year. 1979).
This specialist who initially saw me was an Indian gentleman from Calcutta
named Dr Samarasingh, educated in the United Kingdom at Liverpool
University, being also a Hematology professor who would now be in his 60’s.
He had difficulty being accepted by the snobbish and bigoted medical
fraternity in our own country, as have others even as late as last year
have done, and departed back to Europe after about 3 years. I was informed
by him after careful and meticulous tests, admittedly without the help of
such technologies as MRI that he had initially also strongly suspected
Multiple Sclerosis and had been careful not to mis-diagnose the two. He
obviously had considerable depth of knowledge more than I now know to be
the case when compared to my more recent experiences. I suspect this was
due to his overseas involvement.
I still remember to this day his words “Young man, I know what you have, I
suspected MS but you have Transverse Myelitis, I was very careful not to
alarm you by stating anything other than that, but I had to be certain -You
will recover but may have some degree of difficulty in your later years” I
only wish I could track him down somewhere, somehow.
It seems that TM is not readily given any attention to, nor any importance
given only the absolute obsession with Multiple Sclerosis in our area of
the world. In all my subsequent visits to various medical people over the
more recent while I have not heard a single reference to what was
originally diagnosed.
The original attack was identified as being in the “Corda Equina” - have I
got that right - or lower lumbar spinal region of the spinal cord, and
after 1 week or 2 of lower limb and lower extremity dysfunction was sent to
see Dr Samarasingh. I recovered over 18 months with the help of Prednisone
and I would suppose that my constitution and young age had a lot to do with
the strength of my recovery. I was even able to participate in all my
original sports as if nothing had ever happened, apart from the strange
numbness in my toes and “electric buzz” feeling when I bent my neck
forward. The Neurologist also predicted this.
Nothing manifested itself for 16 Years, but a couple of years ago I
developed a burning, dull pain in the same area, along with strange
motor-disturbed function down both legs. Again I found myself at a
different neurologist’s and being this time tested by MRI scan which was
now new technology. The spinal cord was found non-lesioned and clean, and
no pressure-interference existed. I was immediately diagnosed as having
“probable MS”in a most clinical and matter-of-fact manner.
I have always contended that the original diagnosis by the Indian
neurologist was correct and there are several reasons why, which are
corroborated by collective data on the web site, and by people like DR
Joanne Lynn.
1. The attack itself and its symmetric, discomfort symptoms do not concur
entirely with those of MS.
2. The non-recurring nature of the attacks (16 years apart).
3. Radiating body/trunk /midriff pain.
4. The biggest and most personal and mitigating factor the fact that
through the years 21-27 was also coping with the most horrific bouts of
herpes simplex, at that time also a relatively new epidemic.
This last factor is what I have been seeking for years, some isolating
component that gives weight to the theory that something didn’t quite add
up. I would like to communicate more on this to a researcher in this field.
It is not just unacceptance of a verdict, but calculated appraisal of my
own medical history whereas the powers that be did not ask for it in
support of theirs. (in New Zealand anyway)
Thankyou for your patience, hope to hear from you.
Best Regards,
Robert Warren (Computer Consultant and Engineer)
14 Stanley Avenue
Milford
Auckland
New Zealand
Email Monty(AT)ihug.co.nz
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Transverse Myelitis Association
Phone: +1 (253) 565-8156
Email: info(AT)myelitis.org
Web: http://www.myelitis.org