Re: Transverse Myelitis

Paul and Jean Loyning (ployn(AT)trib.com)
Sun, 27 Apr 1997 09:32:22 -0600

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
>