Hi Guys,
Today I went back to my neurologist for my routine checkup. As usual he answered all my questions, listened in detail to all my symptoms and goings on, did my neuro exam. I have a lovely neuro, who is kind, always has a smile and doesn't mind taking time out to explain things.
This is what he had to say. My neuro exam is unchanged from previous visits. Shows abnormalities consistent with spinal cord. My diagnosis is still Transverse Myelitis.
He does not think all my symptoms are migraine, he said definitely not, yes I do get migraines but I was trying to blame them for things that is caused by the Transverse Myelitis. He said my varying symptoms and even the new ones are just from the TM and this is the way it behaves, it does not mean things have got worse. His way of explaining it to me was that my electrical wire from my brain traveling down through my spinal cord gets blocked and then short circuits everything, causing my episodes of numbness, burning, pins and needles, weakness etc. He said then I am like a circuit board with faulty wiring and messages get sent to the wrong areas causing my problems (something like that), he said it does not mean things have got worse, my messages are just getting scrambled on the way down... the spinal cord.
He said the episode where my left side went numb in the pool and I couldn't lift my arm to brush my hair etc. was my TM, not migraine not stroke, just uhthoff's phenomenon. He said our pool was too hot and being a hot day and doing laps etc. I got my body too hot and just temporarily made my symptoms worse. It did only last 5/10 minutes but it terrified me. He said I will always get problems in the heat. I asked why now am I having so many problems but he said TM can be like that.
He doubts if I will have another attack of TM but he said that sometimes TM can turn to MS or be the start of MS but because my brain MRI have been normal and I have had a lot of brain MRI over an extended period of time he doubts if I would develop MS.
He recommends swine flu vaccines for all his MS patients and told me to get it. He told me that I am not crazy, that my problems are not anxiety, stress etc. that they are real, he said there is no way migraine would cause all that I have going on, it's the TM not the migraines! He has booked me in to see him in 6mths time and if I feel good I can cancel, I think this is to reassure me as sometimes what goes on scares me.
Sorry this was so long, I guess for people in limbo or with TM etc. this might be interesting to read, I thought when I had a new symptom in a different place it was a new attack, not my spinal cord sending messages haywire.
So that's my update.
Cheers,
Udkas,