1. < Neuropathy
Profile picture for roxiesmom13

Transverse myeolitis

Posted by roxiesmom13 @roxiesmom13, Sep 18 9:59am

It’s been a while since I’ve posted but wanted to share my husbands journey. Five years ago he had neuropathy in his feet. Eventually it traveled up his body to his chest and hands. Last July he suddenly lost the ability to stand or walk. He was sent to ucsf for testing then rehab for a month. His diagnosis was transverse myelitis and a rare b12 deficiency which caused his brain/ body connection to not get the B12 into spinal fluid. He passed away the end of Feb from TM. My point is TM needs to be aggressively treated and B12 checked not with just a blood test that shows it’s ok. There are only a few hospitals that test for the condition UC San Francisco being one of them. Only one neurologist ( out of 5) he saw knew about this so if you have questions and they don’t know about it ask them to check. Even though it was too late for my husband I am thankful the one neurologist had read about the b12 connection.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for heisenberg34
heisenberg34 | @heisenberg34 | Sep 18 11:07am

@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.

REPLY
Profile picture for roxiesmom13
roxiesmom13 | @roxiesmom13 | Sep 18 2:29pm

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

REPLY
Profile picture for sandy8043
sandy8043 | @sandy8043 | Sep 18 6:11pm

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

REPLY
Profile picture for roxiesmom13
roxiesmom13 | @roxiesmom13 | Sep 18 6:55pm

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.

REPLY
Please sign in or register to post a reply.