Re: TM Literature
Jo Ellen Finkelstein (ghellen(AT)ninenet.com)
Mon, 13 Oct 1997 15:58:54 -0500
Edrie Goldstein wrote:
>
> I was the person who suggested the possibility of TM being fatal and was
> challenged.
>
> I reiterate my point.
>
> My experience so far is that the medical profession is not very good with
> this disease, at least in my case. My treatment with steroids was delayed
> 12 days from onset while the doctors accused me of faking, and as a
> result, I am wheel chair bound.
>
> The literature supports this view. I have done quite a bit of research at
> major medical center libraries.
>
> Let me recommend one article in particular.
>
> "Lupus Transverse Myelopathy: better outcome with early recognition and
> aggressive high dose intravenous corticosteroid pulse treatment."
>
> Journal of Neurology Vol 242, May 1995
>
> These patients had Lupus, but TM can come from many diffluent sources.
> Mine, we think came from a tetanus shot. Other articles describe similar
> findings from other disease etiologies.
>
> In any event, the article which studied seven patients retrospectively,
> concluded that delay in diagnosis and treatment resulted in poor outcomes.
>
> Four patients died, and one became wheelchair bound. Two recovered completely.
>
> These received the high dose steroid treatment in the first week. The wheel
> chair patient received it on the twelfth day (just like me). The patients
> who died did not.
>
> Other articles recommend MRI with contrast for diagnosis and indicate the
> diagnostic process and the markers for diagnosis.
>
> While this disease is comparatively rare, it is not in neurological
> circles. A competent (Stress competent) and caring neurologist will get the
> diagnoses and treatment right and give it's victims much of their life back.
>
> Every article I have read, going back as far as 1977, twenty years ago,
> supports this view.
>
> Many of the articles try to downplay their conclusions. My view of that is
> they are trying to protect colleagues from malpractice suits. Read the
> articles and not the summaries.
>
> --
> Edrie GoldsteinHI Edrie, In all the literature that I read in the medical library
at the hospital where I was (my home away from home!LOL) They did say
that there is one form of myletis that can be fatal within a few months,
but it wasn't TM. I would imagine that TM could be fatal if it affected
the high cervical vertibrae (reliance on respirators and subsequent
problems with infections etc.) but in general I would think mostly that
it can be managed with consistantly good Doctors and Nurses who care for
their patients and good caregivers in the home to help us cope.
Joellen