Transverse myeolitis

@roxiemom13, I am saddened to learn of your husband's passing. Hearing that only one of five neurologists knew of his condition seems unacceptable. It's no wonder that the public's confidence in the medical community is dropping year by year. I have experienced similar situations in which several "experts" told me that there was nothing else that could be done for me. Then, I continued searching, only to eventually find someone who was able to help me. I hope you are doing well. Let me say a prayer for you.

Thank you for your kind words and prayers. So pleased you found someone that could help you. Bless you

I was diagnosed with TM about 28 Years ago at Mayo Rochester. Mine started the same way your husbands did. I had more than one attack and eventually progressed....or rather regressed to Multiple Sclerosis. 99 % of my lesions are in my spinal cord. Its not a well known disease and I think often misdiagnosed as MS. So sorry you husband has passed. Take care, Sandy

TM can definitely be difficult to diagnose as it does mimic other things like MS. You seem to get it kind of looks like this or that but not enough to call it anything. The death rate seems to be around 10pct and the age factor is a big part of the equation. My husband was almost 81 when he passed. He really believed his TM was from agent orange exposure which some doctors believe could have been the cause. I’m thankful he was healthy until the last 5 years and once he lost ability to walk, and basically was in a fetal position he only lasted 8 months. Prayers for you. Thanks for sharing your story.

My husband had Guillain Barre disease at age 4, unknown cause. Initially they thought it was polio & he almost went into an iron lung. Doctors brought in a physician from France who diagnosed him with GB. It impacted him greatly as he was hospitalized for a year in an air lock room, with minimal human contact & weekly spinal taps. Started first grade with crutches and leg braces. Eventually was able to play multiple sports. Excelled in academia, getting 3 Masters degrees. But in January of 2018, woke me up complaining of excruciating neck & L arm pain. Called 911 & after 11 hrs. in the ER, was discharged with an appt. to see neurosurgery. The MRI showed a spinal lesion at C4- C6, suspected Transverse myelitis. He is now on Vicodin 3-5 times a day. Affects the entire L side. He does well in the mornings, but the numbness & pain hits earlier & earlier every day. It has taken over our retirement & our life. He's reluctant to travel & some days sleeps a great deal. He has multiple health issues, but this is by far the most impactful. I really struggle some days since I have brain & nerve issues of my own. I have really struggled trying to find support for managing this very rare & difficult nerve condition. Any support would be most welcome.

@luvnursing52 I am so sorry you are going through this. They tried rituximab infusions, daily b12 injections and were looking at plasmapherisis but decided the damage was too severe. It is so difficult for both your husband and you. You are not alone. My prayers for both of you

@luvnursing52 I was diagnosed with TM 30 years ago. Mine is largely numbness and tingling. Johns Hopkins is and was the major research and treatment hub. The TM association renamed itself . See here. https://wearesrna.org/srna/

They will have more info.

@sandy8043 thanks for the info but my husband passed from TM. He was a part of the study by UCSF in concert with Mayo Clinic. Sadly it took doctors too long to figure out the problem of TM and acute degeneration of the spine caused by a rare b12 deficiency where he had a serum level that was normal but little in spinal fluid.

@roxiesmom13 The TM assoc. now the SRNA was started by patients to gather info on TM and provide education for patients and doctors. I think they would benefit from your experience and your late husband's diagnosis. We know TM can be caused by many things. Your husband's experience is unique in my opinion.

@sandy8043 yes it was very unique. The b12 part was actually discovered a neurologist at Sutter who had just read an article about it and transferred him to UCSF by ambulance. If it hadn’t been for her we never would have found that part. So it was a month in rehab and he progressed to walking with a walker, going home only to after 3 days being unable to stand, walk, move legs or roll to side. Sorry I rambled on just thought this might interest you.