Re: Transverse Myelitis
sjhanan(AT)e-z.net
Sun, 27 Apr 1997 12:27:04 -0700
Paul and Jean Loyning wrote:
>
> Dear Lorraine,
> I'm writing you again in hopes you will respond. In the last letter I
> forgot one thing, I have no lesions
> at all. When my MRIs came back they were completly clear with no lesions
> what so ever. Can you
> tell me if this is is something that is seen in TM or if you have to have
> lesions? The only thing that came back abnormal was my spinal fluid, and I
> think it had high levels of protein( I'm not sure thats
> what it was but I think so) My doctors determined their diagnosises on the
> spinal test and my physical syptoms. I have no lesions and the first
> doctor said thats because I'm in the beginning stages of MS.
> The second doctor said he felt it was TM based on the fact I had no
> lesions, and the spinal tap info,
> but that it could turn into MS, have you heard of these kind of diagnosises
> before? The second doctor
> told me I have 50% chance of this turning into something more, and 50%
> chance it won't.
> Please help with these questions if you can. Thanks Jean
>
> ----------
> > From: MR JAMES I PRAY SR <UBBE74A(AT)prodigy.com>
> > To: ployn(AT)trib.com
> > Subject: Re: Transverse Myelitis
> > Date: Thursday, April 24, 1997 1:53 PM
> >
> > Hi Jean,
> >
> > My name is Lorraine Pray. I read your note on the Internet to the TM
> > cub. I just started to contribute to that group a few days ago. I
> > have had TM for 4 years now. I am paralyzed from TM from the waist
> > down (T5-6 level). It hit me suddenly and complete paralysis came
> > over me within 8 hours. If you really have TM, your can't afford to
> > wait for something else to happen before this is treated.
> >
> > Many doctors don't know much about TM so they are quick to say it is
> > MS. I have done quite a bit of research on the topic of TM. If you
> > have TM, the inflammatory lesion is confined to the spinal cord. If
> > it is MS, the lesions are located in different sites of the Central
> > Nervous System including the brain. If your doctor took and MRI of
> > your brain it would show lesions. Also, if you look at a cross
> > section view of the spinal cord, it has areas called gray and white
> > matter. In the case of TM, both the gray and white matter are
> > affected.In the case of MS, only the white matter is involved.
> >
> > In all of my research, I have come across only a very few cases where
> > TM went into spontaneous remission without any help. In an
> > overwhelming number of cases, treatment had to be aggressively given.
> > Most people respond to treatment with Prednisone (this is a steroid
> > give oral or IV) and Cyclophosphamide ( this is drug used in
> > immunoadsorption therapy). Cyclophosphamide is considered an anti-
> > cancer drug. It is used to suppress your immune system. Prednisone
> > is usually given first to see if your system responses. If it does
> > not, the next step is to give Cyclophosphamide.
> >
> > You mentioned in your note that your funds are limited but you have
> > to forget about that right now and aggressively look into treating
> > this illness. If it is MS, the doctor is right in saying that not
> > too much can be done. But if this TM, some treatment can be given
> > right now to eliminate it or put it into remission which in a lot of
> > cases is permanent.
> >
> > I live about 15 miles outside if Philadelphia, Pennsylvania. I have
> > a good doctor the has teated quite a few TM cases. Unfortunately, I
> > didn't find him until 6 months after the complete paralysis had hit
> > me. But he did help to put my TM in remission. He has been activity
> > doing research on TM as it related to Lupus and is close to
> > publishing his findings. It is his belief that TM can be a rare form
> > of Systemic Lupus Erythematosus (SLE). His name is Dr. Raphael J.
> > Dehoratius. He is associated with Thomas Jefferson University
> > Hospital in Philadelphia. He has two offices, one office is in the
> > same building as the hospital. The phone number is 1-215-955-1410.
> > You can get in touch with him directly, or have your doctor call.
> > But I believe he can be of great help in determining what you have.
> >
> > As I mentioned before, I have done a lot of research on TM. I have a
> > book full of printed information. If you want me to send it to you,
> > e-mail me an address I can send it to.
> >
> > My e-mail address is ubbe74a(AT)prodigy.com
> > If you want to call me directly : 1-610-789-0364
> >
> > Good Luck!
> >
> > Lorraine
> >
Hi,.....are there many books to read about TM? I found the remark about
the lack of lesions in the brain gave a dx of TM, and lesions in the
brain was more likely to be MS. That is very interesting to me because
my first attack was 15 years ago, and no one knew what was going on.
There wasn't any MRI's, and the spinal tap came back normal. So my dx
was some "mysterious" illness, possibly "hysteria"! Maybe MS. It took
about 10 years to get a dx of MS. Except now it is being questioned
because I only have 1 lesion, and it's at the C5-C7, none in my brain.
I'm going for another brain MRI this Tues. so we'll see what shows up.
Also, I didn't have aggressive physical therapy after the first attack,
but I continued to try and do stuff regardless of my disability. It was
frustrating to do something with my hand/arm and have it not be fully
functional, but I did it anyhow, thinking it would make it better.
Unfortunately, after doing that for the first 11 to 12 years, it has now
quit on me. I can't do anything to get the swelling out of it, and if I
try to use it very much, it gets worse. I can barely raise the arm over
my head because of the weakness. PT, hasn't improved it at all because
of the swelling. But, I think because I haven't been on any type of
program, or medication for this that is why I have progressed, if it it
indeed TM.
I can't tolerated very many meds. the side effects are worse to me then
the actual thing it's suppose to improve. But, lately I have been
bothered by more symptoms than before. I finally have consented to using
some Zanaflex, but it seems to bother my sleeping. [I have weird
reactions to most meds.]
Anyhow, does anyone have some good reading about TM. I am almost
positive I have it. It sounds like the closest to what happened in the
beginning, and the symptoms I experience. More so than MS, even tho the
2 are so closely related symptom wise.
Do you think it's possible to have had one attack, that affected mostly
the upper body, and then have another attack that caused it to move into
my legs?
Thanks for being here everyone to share your stories, it really does
help.
Smiles, Jackie