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reb2011
@reb2011

Posts: 1
Joined: Feb 22, 2012

Looking for info or someone with transverse myelitis

Posted by @reb2011, Feb 22, 2012

March 2011 my husband woke up on a week end suddenly not being able to move his legs, lost the ability to walk, dont have control of his bladder and bowel movement problem. He was rushed to er and after extensive tests the diagnosis was transverse myelitis. Up until that day, he was a perfectly healthy person because he did not have any other underlying medical condition and all tests came back negative, it was categorized as idiopathic. He stayed at the hospital for 12 days, was given steroid, pain meds and everything else to keep him stable. He was later discharge to a rehab where he spend a month of daily theraphy and meds. By the time he went home, he was still under the care of in home therapist with continous meds to take everyday. As we are getting close to a year anniversary, although, there’s a slight improvement, he still is in wheel chair and not able to walk. Today, we just came back from his doctor’s appt which it gets more frustrating when it seems like there is nothing else that doctors can do..while I understand that this seems like a puzzle but I also wonder why we can’t seem to get precise information as to how this condition is treated..Is TM really that uncommon?..I would appreciate it very much to hear from anyone who suffers or care for someone with TM…thank you….

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bettysue
@bettysue

Posts: 2
Joined: Apr 17, 2012
Posted by @bettysue, Apr 17, 2012

my husband and i was camping with grandkids on spring break on the 23rd of march of this year i was standing in the camper when all of a sudden pain hit me in my lower back and it was so horrible i lost the use of both legs. and they had to call an amblance tocome and get me. i stayed in the hospital in for 5 days them giving me steroids thru iv. the pain was still very bad. i had 5 doctors and a person that came in and did nerve tests on my left leg come in and not one could tell me what it was. i left there and went to another hospital and they sent me to another dr. he said it was transverse myelitis. by that time i had use of my right leg and was walking with a walker. the pain was still very bad. he said i had a mile case of it. thank the good lord . i am undergoing therphy and do a lot of exercise thru them as of today thank the lord, i am walking by myself, and i can do some chores around the house. i am so sorry to hear that your husband is so bad. but dont give up god is our healer and he can restore his health. i dont know how rare this stuff is but i know its painful.


Dennis
@defrasier

Posts: 2
Joined: Jul 20, 2017
Posted by @defrasier, Mon, Jul 24 8:47am

Hi,

I have TM. I was diagnosed in June 2011. I have a longitudinally extensive lesion nearly the length of my spinal cord. Initially I was paraplegic for four months. After being treated with plasmapheresis at Mayo Clinic Jacksonville, I began to see improvement. After 6 months of aggressive outpatient physical therapy, I learned to walk again. However, I have bowel, bladder and sexual dysfunction. Additionally, I have tremendous pain most of the time. I’m on gabapentin, clonazapam and hydrocodone. There is a point where you peak on your recovery, but continued physical therapy along with a strict choice in diet can help tremendously. Who is your neurologist and where? And do you do physical therapy?

Warm regards,

Dennis


Dennis
@defrasier

Posts: 2
Joined: Jul 20, 2017
Posted by @defrasier, Wed, Jul 19 11:35pm

TM is indeed rare and there isn’t much that can be done once the initial attack is over. My attack was also idiopathic. I was paraplegic, and after being treated with plasmapheresis, I began to improve rapidly. I walk now. I have weakness, fatigue, pain and balance issues. I also have bowel, bladder and sexual dysfunction. It seems like the hope of curing TM could lie in stem cell therapy. Hopefully the day comes soon where we can have our myelin regenerated. I would suggest getting an appointment at Mayo, UT Southwestern, John’s Hopkins or the TM Clinic in Birmingham. Did your husband get treated with plasmapheresis?


Lisa Lucier, Connect Moderator
@lisalucier

Posts: 152
Joined: May 10, 2017
Posted by @lisalucier, Mon, Jul 24 8:47am

Hi @defrasier, and welcome to Connect.

Sounds like you have been through a lot of challenges with transverse myelitis, or TM. Thought you might like to meet @transversemyelitisalabama and @touringmn, who have also discussed transverse myelitis. Hopefully you can all meet here on this thread.

You mentioned a strict diet has helped in your recovery. Wondering if you could share about what that entails?


kglarson
@kglarson

Posts: 1
Joined: Jun 15, 2012
Posted by @kglarson, Mon, Jul 24 8:47am

i would like to know if anyone out there has had this awful condition and what have they done to help get thru it! i need help ! i on gambapentin and vicodin for pain . is there any other suggestions? i have had this for 18 months now and im scared !!! they told me i would get over it.

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