Comments on: Any Direct or Indirect Experiences with Transverse Myelitis?

Question: Any Direct or Indirect Experiences with Transverse Myelitis?

yhbc — Tue, 15 Nov 2005 14:14:07 -0800

Last week, my sister (34 years old, very active and in good health) suddenly developed complete numbness in her legs and arms that completely incapacitated her within 24 hours. After a few harrowing days in the hospital during which more and more things were ruled out, today the definitive diagnosis is Transverse Myelitis. I had never heard of this before; does anyone have any experience (direct or indirect; family or friend) with the disease? Thanks in advance for any stories or indications of what we can expect.

By: Plutor

Plutor — Tue, 15 Nov 2005 15:19:35 -0800

Only indirect anecdotes. Someone I worked with quit to take a cross-country trip. By the time he got across the country, he came down with the same thing. I suggest you spend some time checking out the Transverse Myelitis Association website, especially all the information under "About TM". (If you haven't already.) It's a very serious condition and unfortunately complete recovery is far from certain.

By: yhbc

yhbc — Tue, 15 Nov 2005 19:37:08 -0800

Thanks, Plutor. I'm finding that out, and I am going through the TMA site and printing out the articles. Unfortunately, I'm in Massachusetts and she's in the hospital in Oklahoma City, so I may be taking a cross-country trip myself soon.

By: seymour.skinner

seymour.skinner — Tue, 15 Nov 2005 19:46:48 -0800

Cody's First Step follows Cody Unser (Indy 500 winner Al Unser Jr's daughter) and her battle with this disease.

By: Alison

Alison — Tue, 15 Nov 2005 20:09:12 -0800

A friend's roomate is recovering from Transverse Myelitis. My email is in my profile if you would like me to try to get you in touch with her.

By: ikkyu2

ikkyu2 — Wed, 16 Nov 2005 14:14:42 -0800

Well, we think that TM is an auto-immune illness. It shares a lot of features with multiple sclerosis; in fact, an isolated attack of TM that is followed by an attack of demyelination elsewhere in the central nervous system is MS by definition.

Complete recovery isn't unheard of by any means; nearly everyone will make at least a partial recovery. In general the prognosis is pretty good. Treatment includes glucocorticoids like Prednisone, and often other immuno-suppressants too, depending on the particulars of the case. Physical therapy is as important as anything else during the recovery process.

So, that's a lot of neurological blah-blah. Bottom line: it usually gets better, sometimes recovers completely, sometimes means worse things down the road (sometimes not), and it's not a permanent sentence of death or disability by any means.

By: yhbc

yhbc — Wed, 16 Nov 2005 14:35:58 -0800

Thank you, ikkyu2. She is on prednisone at the moment and responding to therapy - walking with support and moving a little more each day, I understand. It may be a long process, but she and her doctors are optimistic she will make at least a reasonable, if not a complete, recovery.

Alison, I think I will wait to talk to my sister about this specifically before I line anyone else up to get in touch with, but thank you for the offer.