Connect
Transverse myelitis (TM) Or Spinal-cord virus
Transverse myelitis (TM) We were told it is Spinal-cord virus, i’m trying to see if there is anything I can do to help my mum she’s been disabled for about 18 years due to spinal-cord disconnection and I have seen a video on YouTube that someone can someone help that had a spinal cord injury she can stand up walk with a walker but she can’t lift her legs or stand on her own without a walker and a little help if there is anythingOr anyone knows that there is help or medication or surgery please let me know thank you
Like
Helpful
HugInterested in more discussions like this? Go to the Infectious Diseases Support Group.
Connect
Nerves have very poor regenerative ability. That's why spinal cord injuries that put people in a wheelchair are essentially permanent. I am a sufferer of transverse myelitis (post viral) so I am fully aware of the limitations that has been place on me including the continued pain and loss of proprioception.
I developed myelitis from a virus over a year and a half ago and am still having symptoms that can be debilitating
@jaz4 I wanted to welcome you to Connect. I don't share your diagnosis, but I am a spine surgery patient. While you wait for other responses, do you have some coping tips that you would like to share?
I have a complicated condition. I’m experiencing weakness especially in my lower body along with intermittent tingling. My legs feel rubbery and my upper body feels a bit shaky. It seems to be coming from my cervical spine. I exercise every morning and try to take walks. I did Vyvgard Hytrulo injections for a couple of months. I’m not sure if it helped, but I was doing a little better. A low dose of Valium twice a day has been helping as well. I started pt and they saw my neck was very weak. After doing some neck exercises at my first appointment , I have been extremely inflamed throughout my body. Now, I have a setback and need to just rest.
@joanannzick4 That sounds like a complex situation. Resting is sometimes the best thing to do. I know for me, injections make me worse, and I think the culprit is the polyethylene glycol that may be in them. I've pieced together my reactions over the years and it seems to come down to that. It causes swelling in me or an asthma reaction. If injections make you worse, that may be something to ponder. Have your doctors tried anti-inflammatories or prednisone?
I have done multiple steroid infusions. They didn’t give me much relief, at least immediately. Moving makes me feel better. I learned that my weakness is in my neck. I can’t do any neck exercises or else I will have a total flareup.
I was diagnosed 8 months ago and haven’t returned to my active lifestyle. I’ve tried many treatments and have improved since the onset, but not nearly where I used to be.
I would welcome any help if anyone else is dealing with this.
@jaz4, I moved your post about connecting with members dealing with transverse myelitis to this existing discussion:
- How are you dealing with transverse myelitis? https://connect.mayoclinic.org/discussion/i-have-transverse-myelitis/
I did this to help connect you with other members like @kc161 @hoytpr @barnlady @upnort and more.
Here is some information that you may find helpful:
- Transverse Myelitis - Diagnosis and Treatment: https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/diagnosis-treatment/drc-20354730
Has you tried physical therapy, which is one of the options listed?