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[KayDub]

So I had my (hopefully) last group of doctors appointments for a long time, with all sorts of spinal MRIs and nerve tests (EMGs, etc.) and my neurologist finally found a diagnosis.

Transverse myelytis at the T 10 level.

So yeah that explains all my B&B problems (I can feel it some of the time and it's my muscles that don't quite work so I've had to put myself on a regular schedule with a BP, no cathing though), my obvious not being able to walk problems, etc. They thought it was Guillian-Barre at first, then TM in my lumbar spine but my sensation and motion are affected at T 10 (but incomplete). The motion I had before was mostly twitching and a lot gravity (using my upper body on crutches and swinging). I have gained some motion back in my left leg but my right leg can't move from the hip down. I thought it was the knee but that was gravity.

So I feel kind of stupid but am glad tests have finally been done for a diagnosis instead of just different doctors (hematologists, GPs, pain doctors, not neurologists) guessing. Hopefully I can get an appropriate PT set up and really address issues I have like B&B that other doctors told me weren't problems (and I believed them). I'm finally on an appropriate level of Baclofyn and it's helping my spasms soooooooo much.

Also still waiting on my new chair but getting a Q 7 which I'm excited about. Taking the insurance authorisation into my own hands because my DME... sucks.

Moral of the story? If you get sent to ICU abroad and because of your insurance they are just told to stabilise you, despite being afflicted by a number of problems, BRING YOUR MED RECORDS when they medevac you so you don't spend months with the wrong doctor. Also try to get a proper diagnosis while in hospital, don't just let them treat a few symptoms and send you on your way. Not a likely situation from most but hopefully someone can learn from my mistake!

And I missed you all here!!!!!!!!!!!!!! Other forums are not the same.