Originally diagnosed as a spinal cord tumor

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Transverse Myelitis is the latest name they’ve put on my problems. I’m not totally sure from my reading if they’re actually right this time, since I didn’t have a sudden onset. But here’s the history.   

About four years ago I thought I was getting carpal tunnel in my left hand, after having surgery on my right a couple of years earlier.  But the numbness kept moving up my arm and getting worse than I’d had with the right. Then I started tripping on flat smooth floors and getting more and worse numbness, burning, etc. and this kept getting worse over the better part of a year.

Finally ended up with a neurologist and after she ran the exam, MRI, more lumbar punctures than you can imagine (since they have trouble getting the fluid out of me) and every blood test known to man, it looked like a spinal cord tumor, c-4 to c-6. So we went ahead and scheduled surgery for that. Had the surgery but it wasn’t a tumor, and couldn’t be removed. The biopsy results were “probable autoimmune process” - can you get much more vague than that?

Then I got an infection from the surgery, and a violent allergic reaction (Steven-Johns syndrome) to the antibiotic for the infection and landed in ICU for two weeks, the hospital for six more weeks, rehab for another four, and on dialysis for kidney damage (that luckily got somewhat better after six months). So for quite a while I wasn’t really pushing on finding out what was actually wrong that started the whole mess.

I then had a full evaluation at Mayo, and ended up still at something autoimmune that wasn’t MS, or Lupus, or any of the usual suspects. And there wasn’t a lot they could try to do about it since my kidneys still weren’t working.

When I got enough kidney function back to get off of dialysis they tried a long run of IV steroids, which seemed to help a little, but not a lot. I also started to see a rheumatologist to try to work on the autoimmune aspect. I’d had mild RA for years, and they thought that might tie in as well. But immune suppressants don’t seem to be helping much either. Also got an opinion on my MRIs from a neurosurgeon who works with spinal cord tumors a lot, and he was the first one to mention transverse myelitis.
                                           
So after all of this they still don’t know for sure what’s wrong, but it is definitely a lesion in my spinal cord. Meanwhile I’ve got all the itching, tingling, numbness, temperature confusion, bowel and bladder issues, weakness and loss of proprioception - and no label to stick on it.