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.

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