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  • Numbness and tingling in my lower body, bladder issues -transverse myelitis

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    Old 01-13-2019, 11:00 AM   #1
    karin57
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    Numbness and tingling in my lower body, bladder issues -transverse myelitis

    I have been diagnosed with transverse myelitis. I started to notice tingling in my feet about three weeks before my ER visit. The night before I went to the ER I had the urge to pee but was not able to urinate 12 hours. At that point the numbness radiated from my feet all the way up to my bra line. At the hospital they did an MRI, with and without contrast, a brain MRI and a lumbar puncture. They determined that I do not have MS. They noticed cloudiness on my spinal cord on the MRI and determined this was transverse myelitis (TM). They treated this with 8 days of heavy dose IV steroids. On around a day 4 , I was able to pee on my own again and noticed my mobility getting better. When I left the hospital I was optimistic. After returning home on day 9 of no steroids, I started to notice that my symptoms were reappearing and they were worse this time then when I entered the hospital. I saw a neurologist and urologist on day 10. I am now on a Foley catheter as I cannot urinate on my own. The second opinion neurologist said that I should've been on a tapering off dose of steroids after I left the hospital. He has now prescribed a 12 week tapering off dose of steroids. Today is day 4 of being on this tapering off dose and I am still not seeing any improvement in my symptoms. I was able to get in touch with my hospital neurologist and he still stands by his belief that I do not need a tapering off dose of steroids. My current neurologist ran it by an Endrocrinologist and both are in agreement that I should be on the tapering off dose of steroids. I am curious as to what treatment plans everyone else was under with TM. I have done some research on TM and it seems like everyone's recovery is so different. I have always been a very healthy person, this disease has certainly set me back quite a bit, both physically and mentally. The doctor's can't say how long it will take to recover or if you will recover. At this point, I hope to regain the ability to pee on my own again. I would appreciate any words of wisdom from anyone having gone through TM. In addition has anyone had their symptoms get worse before getting better?

     
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    Old 01-18-2019, 10:58 AM   #2
    teteri66
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    Re: Numbness and tingling in my lower body, bladder issues -transverse myelitis

    Iím sorry no one responded to your post...and I am very sorry you are suffering from transverse myelitis. It sounds like a horrible thing to have happen.

    I donít have anything to offer but wanted to acknowledge your post and wish you well. Iíve had four lumbar spine surgeries and have some permanent nerve damage. Any time you are dealing with spinal nerves, it is impossible to predict what may occur in the future...how long it takes to heal, whether it will heal, what condition you will be left with, etc. I think nerves are one of the least understood areas of the body...something most neurologists would agree with, I believe.

     
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