Results 1 to 10 of 10

Thread: Newly diagnosed with Transverse Myelitis: Treatment suggestion given

  1. #1

    Cool Newly diagnosed with Transverse Myelitis: Treatment suggestion given

    Dear Forum Members,

    I became a parapalegic back in December 2007, after radiation/chemo/bone marrow transplant and other treatments related from a Leukemia (ALL & AML) diagnosis back in May 2007. Just when I thought I was recovering nicely from the bone marrow transplant from an unrelated donors stem cells, I could no longer walk then stand. I have been at Shepherd Center in Atlanta for spinal cord injury rehab the last 6 weeks and will be going home to Tampa later this week.

    Yesterday, I was diagnosed by a Dr. at Emory as having Transverse Myelitis, also known as Radiation Myelitis, after an MRI showing increased inflammation in the spinal area. He has suggested I do the following during the next 6 weeks or so:

    1)Begin combination treatment for 6 weeks with “Trental” 400 mg twice daily and Vitamin E 1000 mg a day
    2)Begin Hyperbaric Oxygen Chamber for 6 weeks on a weekly basis
    3)Begin high dose steroids IV drip with Solumedrol and Gammaglobulin of 3-4 doses over 1-2 months

    I seek a 2nd opinion and wonder if there is anyone else with a Transverse Myelitis diagnosis and what has worked for them, or if you have any feedback on this suggestion above.

    Thank you, Jeff

  2. #2
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Jeff, do try to have your oncologist and physiatrist talk to Dr Kerr and possibly get you admitted to Hopkins. His email is dkerr@jhmi.edu. I don't know about full body radiation but I was in outpatient rehab with a woman about 55 who had radiation paraplegia and she recovered the ability to walk within 9 months. I believe she had ovarian cancer. She swore by water therapy.

    Have you had a previous round of Solumedrol? If not I'd ask why you can't start it at Shepherd.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    I have been diagnosed the MS and then Transverse Myelitis. Although I cannot tell you anything about the treatments I do have a Hyperbaric Chamber and have seen how they can work for people. You should try it but unlike me be consistant and follow through.

  4. #4
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    I second Sue's advice. Dr Kerr is the authority on Transverse Myelitis it seems.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5

    solumedrol...

    Hi Jeff,

    I was just diagnosed and hospitalized for TM two weeks ago, so I am still in the early stages of recovery (and shock) and am not even certain yet the real cause of my TM. I am 33, previously a professional athlete, and over the last two years have been diagnosed with chronic kidney disease, vasculitis, psoriasis, and psoriatic arthritis. So it is appearing that my TM is autoimmune related.

    My doctor put me on solumedrol IV drip for 5 days, then prednisone taper. He just increased my prednisone dosage because of slow recovery. I actually feel worse than when I went into the hospital.

    I'm going to look into the research center at Johns Hopkins too. I wish you all the health in the world, and please keep us posted on your recovery.

    Best,
    Melanie

  6. #6
    One of the best treatments I've had is B-12 replacement. Have that level looked at if you haven't already. I wish you the best in your journey!

  7. #7
    Thanks soundguy,

    Right after my last post I was re-hospitalized for 15 days with plasma pharesis and IV Ig treatments. Doc said his goal is for me to be better but not perfect within 3 months. So far, no better...but I've only been out a week.

    I have to call him today because of increased balance problems, I'll bring up the B-12 with him and let you know what he says.

    What did the B-12 do for you, and how did they do it? How long until you felt a difference?

    I'm still on the roids (down to 30mg/day) and now on neurotin, tramadol, percoset (as needed), colonopin, restoril, multivitamin, and a host of others for my related autoimmune issues.

    Thanks again!
    m

  8. #8
    Hey Mel,
    I have tried all three ways of getting B-12 into my system(shot,pill,nose spray). The later is what I use. Started it 9 months ago. It's Nascobal 500mcg 1x week. For me this is how it went. After the first spray within an hour ALL my symptoms disappeared. This lasted for 2 days. Then it all came back. But, I sleep more soundly and longer. My bladder dysfunction is much better. I also had very bad dry flaking skin on my face that is now gone. I am not as lathargic anymore. So this seems to be a slow building process to keep a long term full level of B-12. I believe that it's the key to unlocking my puzzle. Otherwise why would I have such dramatic relief to begin with? Let me know how it goes. I wish you well in your journey.

  9. #9
    I brought up the B12 treatment with my doc when he called me yesterday. His response was that I needed another course of IV Ig in 3 weeks. I'll be seeing an integrative med doc on the 21st and bring that up with him.

    Where did you learn about the B12? Did you explore CAM?

    PS I have the flaky skin too. I believe its from the roids. I know this is a girly response, but I've found some great moisturizers that lessen the flaking and the thinning of the skin.

    Thanks for all of your guidance.

  10. #10
    learned about my B12 issue from neurologist. I also tried many creams and things for the skin. These only moderately helped until I started B12. Let us know how it goes.

Similar Threads

  1. Ivig Treatment
    By Shana in forum Tranverse Myelitis, Multiple Sclerosis, Non-traumatic SCI
    Replies: 8
    Last Post: 04-19-2008, 10:46 AM
  2. Replies: 26
    Last Post: 05-05-2006, 02:07 PM
  3. Replies: 0
    Last Post: 08-10-2005, 01:07 PM
  4. Replies: 0
    Last Post: 08-10-2005, 01:00 PM
  5. Krishnan, et al. (2004). Transverse myelitis pathogenesis, diagnosis, treatment
    By Wise Young in forum Transverse Myelitis Research
    Replies: 3
    Last Post: 05-05-2005, 04:11 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •