Any Direct or Indirect Experiences with Transverse Myelitis?

November 15, 2005 2:14 PM

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.
posted by yhbc to Health & Fitness (6 answers total)

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.
posted by Plutor at 3:19 PM on November 15, 2005

Response by poster: 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.
posted by yhbc at 7:37 PM on November 15, 2005

Cody's First Step follows Cody Unser (Indy 500 winner Al Unser Jr's daughter) and her battle with this disease.
posted by seymour.skinner at 7:46 PM on November 15, 2005

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.
posted by Alison at 8:09 PM on November 15, 2005

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.
posted by ikkyu2 at 2:14 PM on November 16, 2005

Response by poster: 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.
posted by yhbc at 2:35 PM on November 16, 2005