Transverse Myelitis & Side-effects

I'm sorry for what you are suffering. I developed sensory and motor peripheral neuropathy after the Pfizer vaccine. There was evidence of dorsal root ganglion (spinal) involvement because the nerve pain and numbness in my feet and calves were greatly aggravated by sitting, which is not typical of peripheral neuropathy. I discovered that I could greatly reduce the pain and numbness if I completely avoided sitting. My initial neurological symptoms were stiffness in my calves and muscle spasms in my toes. The only thing that relieved the stiffness was myofascial release massage. My impression was that it also facilitated my recovery by relieving the compression on my nerves due to the stiffness. Mostly, the stiffness improved with time, as I recovered from the vaccine injury.

Hello @timr71 ,
I am so sorry to hear that you are suffering, but hope someone here can help. I was diagnosed with GBS 50 years ago, and then they also decided it must be TM due to the long term numbness bladder and bowel problems. The fisiculations never went away, but I never had any large muscle rigidity (still get plenty of spasms). I can only hope you find something to help, or if you are young enough, some time for more healing.

Good luck, you are not alone.

Hello @timr71, and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on Transverse Myelitis which you can find here:
- Transverse Myelitis & Side-effects: https://connect.mayoclinic.org/discussion/heide-germany/

I see that members @pacer3702 and @hoytpr have joined you to share some information.

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

Have you tried physical therapy, which is one of the options listed?

Yes, I spent a month in a rehab hospital, followed by 2 months of in-home pt and am now in my second month of out-patient pt.

After four years my husband got a final diagnosis of transverse myalitis . His damage to spinal cord runs from neck to low back the neurologist told him he will never get back to full function but is stabilized. His main lingering effects is the numbness from feet to chest, pain and balance. Adjusting to life style changes has made it possible to stay moving. Hope you are all doing as well as can be expected

Karla B here.....Hello, My issues have not been around nearly as long as most of the other people posting. My problem began February 4, 2023, with an "on fire" feeling in the left side of my neck & shoulder. Later that night I tried to walk and collapsed - like my leg joints wouldn't work at all! I went to ER the next morning, and after a lot of CT scans, that doc sent me to a large hospital to see neurologists. The hospital did full body MRIs, repeat MRI of head and neck, spinal tap, and I was treated with 5 days of IV steroids as well as five days of IVIG (immunoglobulin) that the neurologist said was to knock out any virus. Their initial diagnosis was a spinal infarct or stroke. A consulting doc saw me and said that I had not had a spinal stroke, as I could still move everything. His thoughts about diagnosis was MOG or NMO, but the hospital would not test for those for an inpatient. He told me to go to a neuroimmunologist who would test for those problems and others. My consistent symptoms during 10 days in the hospital and 5 weeks in rehab were numbness in my left hand, mild weakness in my left arm and leg, numbness on my right side toes to armpit, pain on movement, amazing leg spasms that hurt and wouldn't let me sleep, and inability to walk because my legs would buckle. I was transferred to a rehab facility where I stayed for 5 weeks and had daily PT and OT, which at least strengthened my legs and hips and allowed me to walk with a walker. During that time I saw a neurologist who didn't want to hear me at all and said that I have transverse myelitis, that he tried to connect to any illness I had had that might cause that. I told him I'd had COVID in July. End of conversation! He gave me a referral to have a repeat MRI in a month to see if there were lesions on the myelin around the level of C2-3 in my neck, and an appointment to see his PA after that. After a lot of talking to my GP and pain doc and PA in the rehab place, I finally was able to see a neuroimmunologist at the local teaching hospital. She went through all the hospital records, MRIs, and CTs and told me there was no swelling in the spinal canal, and therefore changed the diagnosis to transverse myelopathy (more vague than the first neurologist). She said one month to repeat the MRI was not long enough to see any changes, so she set me up for repeat MRI of brain, cervical, and thoracic spine 3 months after the beginning of this mess, then a return appointment 3 weeks! after that to go over the findings. The only changes in my condition is the numbness now going down my right arm, which she did not seem particularly worried about. I'm taking gabapentin for the nerve pain and baclofen to sleep and which seems to have calmed the leg spasms. I'm continuing with outpatient PT, water PT, and water aerobics, just biding my time to see what's next. Any thoughts? If I'm not talking to the correct group, please move my conversation to the correct one. Thanks so much for taking time to help me and so many other patients.

I'm sorry for all that you have had to endure. You might try taking palmitoylethanolamide (PEA) dietary supplement to reduce neuroinflammation. There is good research evidence and a good safety record. The benefit would be subtle and accumulate over time. There are ACE2 receptors on the dorsal root ganglion neurons, which may explain the transverse myelitis-like condition experienced by some Covid patients and also some Covid vaccine- injured patients.

Karlabgs, I am glad you got a quick diagnosis so treatment got started quickly as that makes the prognosis better according to our neurologist. Sounds like you are getting good care. They believe my husband's cause was probably the results of agent Orange. Hope you progress to a good recovery. I read on one of the medical sights ( Mayo, Johns Hopkins, Cleavage clinic) are my go to sights., that one third of the people with TM have a full recovery with time, hope your in that group.

Thanks so much. I'll check out your suggestion.

Thanks for your input. I will definitely check out the other sites. I'm not completely sure about the TM diagnosis, even though the first neurologist said that's the issue, as the neuroimmunologist said she didn't see any inflammation. Hopefully the MRI next month will be more telling and may direct me to some meaningful treatment other than "wait and see." I so appreciate your kind thoughts and hope that in time your husband may recover.