Transverse Myelitis

Hi, was diagnosed with TM (idiopathic), took about 3 years.  Went to John Hopkins Univ. to see a specialist, i have tried most antispasmatic drugs, baclofen, zanaflex, flexeril, etc...  None of these seem to work.  I have only the one lesion across both widths of cord.  I was told there is no active inflammation, therefore normal treatments like steroids which i tried to no effect, questioned the Dr. about Plasma therapy, was told would not help because of no active inflammation.  I am at a loss here, i thought i went to the best hospital, but to my surprise, i was very disappointed in the way i was treated.  They have the only TM center that i know of.  I have very much difficulty walking, extremely tight calf muscles, very weak legs, i am working out 3 days a week to try and get the strength back.  My question is, the new drug that was approved for MS, and other neuro conditions has helped a great deal with most patients, could that be a possibility for patients like me?  If i can't get an approved prescription here, i may have to investigate other ways, i guess i want to know would this be a safe medicine for me to try?  I am extremely desperate for any help you may have.  

[Dr. A. Srivastava]

I do sympathize with your health concern. As of now, there is no permanent cure exists for transverse myelitis patients. Usually, treatment is designed to manage uncontrollable neurological symptoms and new researches are still in process of finding sure success treatment. Therefore, I cannot assure you about any permanent cure here. Initially, doctors may suggest you to move your affected limb manually in order to improve muscle strength, coordination, and range of motion. Then, further referral to a physiotherapist helps you to regain normal function. In addition, physical therapy, occupational therapy and vocational therapy help patients left with permanent physical disabilities. I would recommend discussing all these treatment possibilities with your doctor. Hope this helps.

[StormyRenee]

Hi,
Go to  TransverseMyelitis.org
I was initially diagnosed with TM and theres a ton of helpful info on this site......

Take Care, Theresa

[RlgRock]

Hi Dr., thanks for your answers, in your professional opinion, can you recommend any other medication to reduce such spasticity and weakness, that is a huge concern of mine. I have tried baclofen, zanaflex, flexeril with no change.  

[Dr. A. Srivastava]

Thank you for your question. However, it is sad to say that treatment is usually symptomatic only like what has been prescribed to you and corticosteroids is being used with limited success. I would recommend that you consult your neurologist in this regard. Hope this helps.