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> 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
>