Welcome to the Transverse Myelitis and Atraumatic SCI forum

[snowyrivers28]

Respected Dr. Young,

I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?

what are your symptoms? i think i have tm also! i woke up one morning after a painfull night and a 2 week old car accident and was totally numb from my waste down to my toesand feel myself go to the bathroom barely walk even i will hopfully find out today i have allready 2 MRI ,cat scans,x rays wtf is going on

[snowyrivers28]

What kind of pain do you have and where is your syrinx? A lot of doctors have acted as though I was crazy when I decribe my pain or symptoms.

omg mine did to it was so bad i had to tell the doctor what i wanted (MRI CAT SCANS X RAYS) i was like wow do u even care? now the neurology thinks i have tm- transverse myelitis, but 3 weeks ago it was nothing to him-my doctor-

[Sue Pendleton]

Snowy, no one dies of TM if they are in the hospital and being treated at least not from the waist down. You would have to have an allergic reaction to a drug or have it move up to the muscles you breathe with and that is also treatable. TM has many causes so you may want to read more at myelitis.org . If you haven't gone to the ER yet, GO! The sooner the medications can begin the more likely you'll have a light case.

[phil99]

You have to take responsibility for everything, including the doctors you see. If they are no good, then get second opinions. I personally believe that although Doctors obviously care, they are often too rushed/overworked to do things properly, so become the expert yourself.

[Whitehall1212]

This is my 4th year after a TM attack at the T7. After a couple of months I made a 80% recovery, but now I feel that I am loosing some mobility, because of pain around the right side abdomen . This feels like a 'stitch' as happens if one runs, I have had IBS for years off and on, and also Fybromyalgia.
A couple of medical practioners have given me their opions, one said it is the IBS, one said it could be the facia muscle system now stiffening. It has been suggested that I have all the IBS test again, Barium mells and Xrays, it dosnt feel like the IBS more like the Fybo, and I am wondering if the TM could have changed the muscle control of this area over the last year? and How could this be investigated? and treated.
I have also and odd body temp sequence, I am hot most nights but my temp drops to c35.5 at many parts of the day. I take' ordinary' pain killers.
as required.

[makoman]

About a month ago my father in law started having back pain which slowly increased and included numbness/lack of control in his hands then legs. After several ER and doctor visits for this he was finally admitted to the hosp with a diagnosis of idiopathic transverse myelitis and put on a methylprednisone drip. Symtoms seem to have improved slightly after 3 days, but he still cant walk and will be discharged in the next week to a rehab facility, he's 78.
My question is, does anyone know of a good in-patient rehab facility in the south florida, west palm beach, area ? Also any nuerologists specializing in TM that he may get further advice from?

Thanks for any input.

[Pirate Mommy]

Hello,

I was diagnosed with TM 3 years ago, after losing all feeling in the lower half of my body. It returned 3 years later, almost to the day, this time in my arms. I have a great deal of nerve damage, and tons of spasming, as I'm sure many of you do, as well. However, today, I was also diagnosed with osteoarthritis of the spine, and I am wondering how this new piece will fit into my already abnormal puzzle.

Are there others out there who have this combination as well? How will one affect the other? Any input will be greatly appreciated.

Thank you.

[Pirate Mommy]

I'm in North Florida, Disney area, and I have had great treatment at UCF in Gainesville. They are quite a trek, even for me, but they helped me with my second occurance when no one else could. Ask your father's neurologist about it, the medical school was crawling with brilliant minds all working together to help me through the TM. Best of luck.

[lynnifer]

Hi ... Pirate Mommy ... are you answering your own question or ... ?

I have TM. I'm afraid I'm not familiar with anyone having both illnesses, although long term paralysis (in my case from TM) can cause bone density loss.

[royandjoe]

name roy seen lots of doctors in arkansas but scar tissue is causing lots of pain after surgery one pain doctor said he new all about it pts come to fine out he had one pts and she turn to street drugs and he let her go i am still trying i can walk some but not to much i give out easy