Tranverse Myelitis

[Sue Pendleton]

thank you Sue. As you can imagine me and the family are overwhelmed! Kevin my brother did do his acute rehab at Mt. Sinai under the guidance of Dr. Bryce and will do his follow up with him but doesnt meet with him until March 26th. What should we be doing in the mean time? Is it too late to consider plasmapheris?

I'd call his office or email him if that is an option and ask his opinion. I have heard varying times from 5 to 7 days after the end of steroids to several years. And I am not qualified to say how far out the process might add to recovery or help deal with pain issues.

[cdurfee99]

I was only kidding, I have a sick sense of humor since my 10 year anniversary of hell, and a fog of pain, frustration, impotence, no sensation is coming real soon. My Tm was actually a type 4 spinal av fistula on the anterior pial surface of the cord, just above the Conus. It strangled my spine and deprived it of oxygen, since the anterior spinal artery supplies 90% of the gray matter in the vital region of neurons in the cord. A total disaster, there misdiagnosis made me very rich, but I can't believe that at least one of those doctors are still working, nevertheless Neurology

[May]

Hi Bryan:
The rate and degree of recovery seems to vary from one individual to another and seems to be not really predictable. I was diagnosed in September 2008. I had never heard of TM before. There was online access in the hospital room and one of the first sites I went to check said that if the onset of TM is sudden, the prognosis is likely to be be poor. In my case, onset was a couple of hours so reading that really upset me. However, I have recovered remarkably well. It's now seven months since diagnosis. I attribute my recovery to a quick diagnosis and early intervention with steroids. I had two weeks of acute rehab followed by three months of outpatient rehab and I don't think I would be where I am today without that. I have been walking without a cane since early November and now walk a few miles a day.
Feel free to PM me if you have any questions.
You might also want to check out the TM forum at http://www.myelitis.org/forum/ I have found that to be a great source of information and support.

[cdurfee99]

-sci nurse
you should be ashamed for mentioning Mt. Sinai as a possible treatment option!! They misdiagnosed my TM for more than 1 month, and I had to go somewhere else to find that i suffered a spinal avm, which was very visible on my MRI's. Dr. Ragnurrson's spinal rehab dungeon, was where I was virtually given up on, and discharged before my spinal avm was diagnosed. In short, they sent me home with a untreated spinal avm, because they felt there was little if nothing to be done with me. I have never seen anywhere as grim, negative, and utterly depressing as Mt. Sinai's rehab ward!
If you have actual idiopathic tm, with prompt steroids, I like your chances for at the very least, a partial, yet significant, albeit painfully slow recovery. As for me, my spinal cord injury is indeed hopelessly irreversible, as they told me all too often, due to the very fact that they didn't feel it urgent in the first place to correctly find what kin the hell was wrong with me in the first place!
Yes, I attended Mt. Sinai's dungeon of horrors, and no, they are not the place to goto if you have tm, since when I was there, Dr. Ragnarsson didn't even know what TM is or was. Today, I am planning my will, and completing end-of-life decisions and preparations.

[cdurfee99]

dr. bryce- not a bad guy per se, but clueless to what TM is, unless he did some reading since 1999 when I was literally left for dead by him and ragnarrson.

[lynnifer]

I have found that more medical personnel are now much more familiar with Transverse Myelitis than 10yrs ago and especially 24yrs ago when I developed it.

I'm sorry you had such a terrible experience with misdiagnosis Sherman. Has it been ten years already?

It's frustrating as well as gratifying to know that there is at least 'some' treatment for TM now ... wish steroid usage and ivig or plasmapheresis has been around when I was 12!

[mitchyates]

I've tried a couple of anti-depressants (prysitque and wellbutrin) since my SCI 4/21/07. Both increased my spasticity and caused my gait to be worse. My injury level is C7-T1 Incomplete. Can you recommend an anti-depressant that SCI patients do well with?

[sinbin]

Hi all. new here. diagnosed with TM late 2008. Got sick with an upper respritory infection in July 2008. Got really sick in Sept. 2008. Went to ER, nothing wrong - sent home. Nothing "drastic" but I knew something was wrong. Follow up with Neurologist, sent for first MRI - lesion c2-c3 region.
had LP, nothing much showed. Slight protien level variation. Just went back for MRI past Monday. Waiting to see DR on Wednesday next week.
Scared as all get out.
There's nothing worse than not knowing. If I knew what was going on, I think I could deal with it. Glad you're all here.

[Tomislav]

Well, I also had TM and I was paralised from neck down and i couldnt do anything but look around and talk. I have a chance to fully recover and I try hard, but when u have complete muscle atrophy it's very very hard so my PT told me to try electrical muscle stimulation. I started it few days ago and I already have better sensations on body parts I'm using it on. I live in Croatia and I'm like 5th case in 10 years I think. If your brother was diagnosed early he can fully recover but if Docs didn't know whats wrong for a week or more he could recover well but not fully as I understood what I have been told. I wish your brother good luck.

[cdurfee99]

tomislav- how is your recovery coming along? No offense to Croatia, the opposite actually, but I had TM in the good 'ol US, new york city, of all places. Lucky me? No! The idiots running the jewish hospital were too busy doing anything and everything, but treating me like a real patient. I will spend the rest of my days in pure hatred and bitter spite, and it actually cheers me up a little, to realize this. I live for hate!