Hi Louise,
Mine was across both sides also. Because of it being on both sides, it has
caused havoc with my urinary problems. I was cathing before I got TM because
of Cauda Equina Syndrome; and then learned to cath once paralyzed. My urinary
problems have gotten much worse; and I am to have a surgery fairly soon.
Probably within a month. After that I will not be cathing anymore and I will
stay drier. It's unreal when I look back on my life. A car wreck around mid
20's left me searching 5 years to find someone to find the cause of my severe
neck pain. I went to the world's largest spinal clinic at the time, Texas Back
Instiute, inwhich they found I had been living with 3 cracked discs for 5
years. 5 years it took to find the right person to tell me what was wrong. I
had to say "goodbye" to a good Federal job, but I didn't have a life per say.
Then, a few years later, bending over to pick up a mat from vacumming the
inside of my car at a car wash place - it ended up in the
road and I had to run in the middle of the road quickly to retrieve it. 2
hours later at home; I got up from the recliner and my back went out; I just
about went to the floor. That added to the neck pain that had never left, even
after surgery; left me thinking what else could happen. Surely that is it.
Then, after having 3 back surgeries for a herniated disc in the last couple
years, which finally gave me pain relief in the lower part of my back; I come
down w/ more back & leg pain; only to be diagosed with TM. I sometimes wonder
if my dr. didn't use enough of the IV steriods to try and reverse it. He did
it like one day and that was it. Nothing about a plasma exchange, where I've
read about as a secondary method to reverse severe TM. So, it's ironic instead
of volunteering for a group w/ disabilities several years ago after work; I
find myself disabled for a number of years and TM being the worse. My pain
goes all over the trunk of my body. It travels from one
leg to another into my foot. I was a mess yesterday. I would be today if I
hadn't taken enough meds to control it ahead of time. I have never seen a
disorder/or disease like this. 20 plus years on a morphine pump and I thought
last year after the last surgery - no more severe pain. Little did I know what
was ahead for me......we can't control what happens to us; instead we have to
take what happens to us and make life better whatever it takes.
Sorry for the novel! Natalie Mizenko
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
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