Re: [TMIC] Dx - Concern

hawkins family (hawkinsfamily(AT)clara.co.uk)
Wed, 26 May 1999 18:46:25 +0100

Dear Barbara,
Your message really explains well the difference between recurring myelitis
and ms. As you rightly say, my diagnosis of recurring TM was made on the
basis that there were extensive lesions in the spinal cord but none on the
brain MRIs and no oligoclonal bands either(whatever they are but they seem
to indicate MS). Your information was really useful in helping me to
understand my own diagnosis. Many thanks,
Angela
-----Original Message-----
From: JHarper33(AT)aol.com <JHarper33(AT)aol.com>
To: thedahls(AT)uswest.net <thedahls(AT)uswest.net>; doc09(AT)fuse.net
<doc09(AT)fuse.net>; tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: 26 May 1999 13:21
Subject: Re: [TMIC] Dx - Concern

>Jane and Doc~
>
>I guess maybe I'm just not "getting it" -- I don't understand. I went back
>and reread Doc's note, and I didn't see any contradictions in Dr. Lynne's
>report quoted there, but, then, maybe I am just reading into it the info.
>obtained from this list. My understanding is that usually TM is a one time
>occurrence. But sometimes TM patients do go on to develop MS (Sharon M.,
>Marabeth, and I think some others I can't remember just now). And sometimes
>TM patients have what seems to be a relapse or a second occurrence -- an
>intensifying of existing symptoms or new symptoms -- without any of the
tests
>for MS showing that any of the signs of MS are there (Maria, Karen, Janie
>[SHIGETTE], others), thus the diagnosis of recurrent idiopathic (unknown
>cause) TM. Apparently recurring myelitis and MS are two different things,
the
>one major difference being that those diagnosed with recurring TM don't
>exhibit the lesions on the brain on an MRI and the other things that
indicate
>MS, so there seems to be a kind of no-man's land in-between.
>
>Maybe the problem is that the medical community has not come up with an
>across-the-board method of diagnosis? It seems I remember some on the list
>being told by their neurologists that a second occurrence IS MS. Yet some
>have experienced a second occurrence without the diagnosis of MS. Some drs.
>might be reluctant to diagnosis MS because of the havoc it can wreak with
>insurance companies unless there are very clear test results even though
the
>patient's symptoms might indicate MS. Some might be reluctant to diagnose
>"recurring" TM because TM is supposed to be a one-time occurrence. (Is that
>the contradiction you saw?) Yet, then, what do you call it when someone has
a
>second occurrence without MS signs?
>
>Am I off base or in the dark on this?
>
>And -- one question I have had -- when does a "flare-up" become a second
>occurrence? In my own way of thinking, I have considered an intensifying of
>existing symptoms that did not reach the level of the original TM attack as
a
>"flare-up" (which I have experienced often), but I would consider a relapse
>or a second occurrence to be a worsening of symptoms to the level of the
>original attack or beyond, or new symptoms, like numbness in an area that
was
>not numb before. But I have no idea whether that is how the medical
community
>defines it.
>
>To some this might be so much nitpicking and overanalyzing -- and I agree
>with what Robert and Mandy said, that no matter what "label" is put on it,
>you still go live your life best you can with the best attitude possible.
>Yet, some of us like analyzing details and trying to figure out just where
>the lines are drawn. And, the right "label" does have an effect on
insurance
>companies and treatment options -- I have wondered, like Karen, why TM
>patients cannot partake of MS medications like Avonex. I know in most
cases,
>TM is a one-time occurrence, so drugs like that would not be needed. But
when
>someone like Karen has had a second occurrence that was much worse than the
>first, is seems like those MS drugs should be offered even though there is
>not an "official" MS diagnosis.
>
>Let me know what you think.
>
>Barbara H.
>