My name is Edrie Goldstein (Mrs for those of you who don't recognize that I
have an unusual but feminine first name).
I am 55 years old, married and live in San Francisco. I contracted
transverse myelitis last year, most probably from a tetanus shot.
Previously, I was Director of Nursing for a home health agency, but now I
am disabled and can't work. My husband and family are very supportive and
helpful.
I do need some help from the group. If you get to the end of this rather
long story, which I have abbreviated as much as possible, and can help,
please do. Thanx!
This is my story:
My Transverse Myelitis was mis-diagnosed, and I languished for 2 weeks
being told there was nothing wrong with me and that I should be in an
inpatient psych ward. I was insulted and verbally abused by the doctors who
were treating me. Two MRI=92s were botched before a third one showed the are=
a
of the myelitis.
I only got the 3rd MRI because as I was being discharged from the hospital,
paralyzed from the waist down, incontinent of bowel, retaining urine, and
in great pain, I demanded home care. The PT who evaluated me courageously
disagreed with the diagnosis, brought in a rehab doctor who said that I was
sick and took me up to his unit. The third MRI showed the myelitis.=20
There were, however, other cues that should have indicated the problem
which the doctors chose to ignore. In the interest of brevity, I will not
go into this now but will if there is interest. After the 3rd MRI showed
spinal cord involvement, I was treated immediately with high dose IV
steroids and the myelitis reaction stopped. I spent about three weeks in
the rehab unit, some movement returned to my lower extremities, but I am
permanently disabled, incontinent, and wheel chair bound. I can provide
myself with personal care and can leave the house in a wheel chair. There
is much more of course, but this is the basic story.
Everything which I have read indicates that I should have been given the
steroids much earlier; Steroid therapy is the first treatment for suspected
spinal cord involvement in the absence of contraindications such as kidney
failure and other severe conditions. I even found an abstract of an article
in the Journal of Neurology which describes the importance of quick
treatment with Steroids for Transverse Myelitis.(below)
I believe that my disability has been increased by the delay in my
treatment. I have consulted an attorney about this and here=92s where we are=