I got quite a few responses asking for the whole story so, here it is.
Thanx for your patience!
We really need some help with the legal issues. This is a complicated
matter, and lawyers seem to like easy wins.
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's were botched before a third one showed the area
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's where we are.
He does not believe that he can prove with a preponderance of evidence I
would have been better off if I had been treated sooner with Steroids
because there are no studies on the subject and he would not likely find an
"expert witness" who would be helpful.
On that subject, one doctor told me privately that no studies have been
done because no one would withhold treatment to create a control group.
This doctor, unfortunately, will not be helpful.
Can anyone help?
This is the Abstract referred to above. Does anyone know how I can access
the complete article on the Web. I have tried and can't.
Lupus transverse myelopathy: better outcome with
early recognition and aggressive high-dose
intravenous corticosteroid pulse treatment.
Medline=AE Medlars UID 95370854=20
J Neurol Vol. 242 no. 5 pp. 326-31=20
Type: JOURNAL ARTICLE
DATE: 1995 May=20
Abstract
Seven patients with transverse myelopathy (TM) were found to have systemic
lupus
erythematosus (SLE). Four patients had no prior diagnosis of SLE. All
patients had
positive antinuclear antibody (ANA). All patients had a spinal syndrome
which progressed
to TM with cervical or thoracic levels. The diagnosis of TM was confirmed=
with
neurological tests and neuro-radiographic studies. Delay in diagnosis and
treatment
resulted in a poor outcome. Four patients died and one remained
wheelchair-bound. Only
two patients who received high-dose IV pulse steroid within 1 week of onset
of TM had a
good outcome, with full ability to ambulate without assistance. Our
experience suggests
that early diagnosis with early treatment using high-dose IV steroid
affects the mortality and
improves the outcome.=20
Harisdangkul V, Doorenbos D, Subramony SH=20
Department of Medicine, University of Mississippi Medical Center, Jackson
39216-4505, USA. 1995 970325
-- Edrie Goldstein