I, too, have the TM diagnosis. I wish we had a separate place here in NeuroTalk, because it has different issues than MS in many cases.

I did not have the severe and disabling first attack of transverse myelitis that many do. I have a friend who was rescued off a mountain after she was struck halfway down the hill while snow skiing. Totally paralyzed. Many of my friends from a facebook group have similar stories of total paralysis, even blindness, at the first onset of their TM. Some go through flares tht are almost as severe. TM is a time-bomb to which we are not privy to the timing device.

My TM came on insidiously, first as tingling in my feet, then numbness, then the pain. It all began after being hospitalized for servere ulcerative colitis right after I turned 50 ... so severe they took my entire colon and rectum. For the first 6 years or so all the neuros I saw diagnosed peripheral neuropathy. Then I checked into the MS clinic where my new neuro nixed that diagnosis when he found exaggerated deep tendon reflexes, which he said would be absent in pn. Declaring I had been mis-diagnosed, he set me up for neuro-ophtho testing to rule out Devics, and MRI's to take a first look. I repeat my MRI's for the first time this fall. The only Rx I am on for this is Imuran, an immuno-suppressant, which made sense because after my colectomy I was promptly also diagnosed with Crohn's. His hope is to take the edge of my immune system and keep down the flares. My body seems to thrive on producing inflammation. None of the nerve, anti-convulsives, an other MS drugs we have tried work or are appropriate for me, as they cause flares of my Crohn's. My life is a constant battle between keeping the digestive system working and not going batty with the TM pain. I have also experienced vertigo, the hug, and some bowel/bladder issues, but it is hard to distinguish those from Crohn's sometimes. I am full of adhesions and the scar tissue at my ileal-an.al anastomosis (I have a j-pouch reconstruction where my small intestine is reattached to my sphincter, so I am free of ostomy issues!) . . . I deal with sphincter spasms that can bring me to tears and stop my day. My poor base chakra is a total mess, that part of me has been so destroyed. Some days I don't leave the house, because it would spend all my time finding restrooms during spasms, or unable to walk without excruciating pain. My gait has changed so much that it is affecting my pelvis and back now, in spite of the fact I screamed for help preventing gait issues. However, I continue to do the exercises and stretching my physical therapists have suggested just to keep moving.

My TM diagnosis could morph into an MS diagnosis if there are any significant findings on my repeat MRI's. Or I could remain an atypical TM patient. I count my lucky stars that so far I have escaped needing a chair . . . or worse. Some TMers can end up in iron lungs.

lady_express_44 -- it has been enlightening to hear of your experience and information on TM. Maybe we could convince NeuroTalk to give us our own section here in the MS forum. I know the sharing we do in my FB group (which is women-only, so we can discuss anything and everything) has been extremely helpful to my spirit. What is heartbreaking is that we have a few teens in our group . . .