Hi Natalie,
I hope that, in my e-mail, you didn't think I was saying we would all get MS.
As I mentioned, MS is only one of the underlying diseases or infections that
may have caused the attack on our spinal cords in the first place -- with the
resulting demylination of the myelin sheath and nerves which has left at least
two thirds of us with life-changing problems. I think we all get confused when
we talk about TM turning into something else when it is actually caused by
something else.
In my case, the inflammation (myelitis) was across both sides of the spinal
cord (transverse) and they could not find a definite cause (ideopathic) so the
diagnosis was Ideopathic Transverse Myelitis. They believe it happened because
of a sinus infection I had just before the attack of inflammation. So far,
none of the ongoing tests have shown any other reason and I haven't had a
recurrence of TM to indicate something else may be going on.
I apologize if my description wasn't clear enough and hope everyone will read
the John's Hopkins information as it is really helpful.
Regards again,
Louise
----- Original Message -----
From: natalie mizenko
To: Transverse Myellitis
Sent: Wednesday, May 16, 2007 1:34 PM
Subject: Re: [TMIC] Re: Who's got what?
When I was at Baylor they first gave me an MRI which indicated the
Transverse Myelitis (I had already been diagnosed in Arkansas); anyway while I
was sent over to the Baylor Rehab; right before I left my pain was so severe;
she said most people w/ TM don't have that degree of pain, so anyways, the dr.
ordered another MRI to see if I had a MS; but it was ruled out negative. She
said you do not have MS. She told me about the possible reccurence of TM which
was slight, but she never told me I would later get MS. I am surprised to see
so many saying it will go into that. I haven't read that anywhere but here.
Anyway hope everyone pain is better today, Natalie
Louise Croyden <[EMAIL PROTECTED]> wrote:
Hi Everyone,
I have been reading all the e-mails about TM and MS, etc., and I have
also been confused about it since I was struck by TM in October 2005.
According to what I've been told and have read since my TM episode, TM
isn't a disease but is a condition caused by an inflammatory response to an
underlying disease such as MS, Lupus, an infection....
As I understand it, some of us will later be diagnosed with MS but TM
doesn't turn into MS. The TM episode was actually the first demylinating hit
of relapsing-remitting MS but there was not enough evidence to diagnose MS at
the time. That is why they continue to do tests such as Evoked Potentials and
further MRI's in order to rule out or confirm the MS diagnosis. If there is
evidence that we actually have MS, then they would start the proper treatment.
My Opthamologist told me not to be surprised if they diagnosed me with MS
sometime in the future.
On the website of the John's Hopkins Transverse Myelitis Centre at
http://www.hopkinsneuro.org/tm/disease_and_condition_detail.cfm?condition_id=8
they say that "Several diseases may lead to transverse myelitis, and should be
investigated at the time TM presents itself". Click on Diseases & conditions
on the home page for the three sections of information: Transverse Myelitis;
Transverse Myelitis Care and Transverse Myelitis Associated Diseases.
Under the list of underlying diseases that cause TM, they include some
possible infectious diseases such as hepatitis A,B or C, Lyme disease or
Mycoplasma pnuemonia. There are also separate headings for Lupus, MS and
Vascular Disease.
If anyone hasn't yet checked out the information from the John's Hopkins
TM Center or hasn't looked at it for a long time, it has been updated with more
information since I first read it in early 2006 and has answered more of my
questions.
I hope this helps. I just keep hoping for a minor miracle to help all of
us whose lives have been cha nged so dramatically by whatever disease caused
our TM and keep looking for ways to cope in the meantime.
Regards to everyone,
Louise
<snip>
