Today I met my MS Neurologist. It was re-confirmed I have RRMS - or relapsing-remitting Multiple Sclerosis. It means, for now, the relapses will come and go. There will be good times and bad.
It was a surreal moment - sitting there in the waiting room - only steps away from my (old) workplace. Colleagues were racing too and fro, and I sat there, hiding behind a magazine, not wanting any encounters in the MS waiting room. This place that has been so familiar through work for so many years now seemed so distant and scary.
There was an unusual group of people waiting for these doctors - not all "classic MS-ers" like me - but people from all walks of life. Men, women, people from different ethnicities, those who could still walk, those who could not.
When my name was finally called - after waiting over an hour - I had a full work up and Neuro exam - over an hour with the Resident. Then came in Dr. MS - he was fitting me in as a favour, seeing as we both work in Neurology. He was amazing. We looked at my MRI - he showed me each and every lesion, describing it to me as if it was not something gross and horrific. We then talked medication - all the fun-ness of self-injection. He gave me a ton of reading material to take home, and then... he offered me a spot on his clinical trial. It is comparing a tried and true MS drug (injected 3 times a week, for the oh-so-low-cost of $30,000 a year - thank God for extended health insurance) and a new state of the art brain-child-drug. There are risks involved, of course, but huge potential benefits too.
I go back to meet the nurse and learn more on Tuesday. Until then - I have a LOT to think about and some BIG decisions to make.
Meanwhile - I am going to have another MRI done - to image my spinal cord to see if it has been affected yet. And I need a whole whack of blood tests - some even get sent to Japan to test for a rare MS gene.
Perhaps the most poignant moment though, came right as I was waiting for the elevator to leave. A man who had been in the MS clinic too started talking to me. He turned to me and said "how come you can still walk?" I didn't know what to say. I could see his left leg was limping and he could hardly walk. I told him I was just diagnosed and this was brand new to me. I was expecting him to tell me he's been battling for 10 or 20 years, considering the damage that was already visible. He turned to me and said "that was me a year ago. I have had MS for a year." That moment - that sad yet heartfelt moment - made me understand exactly how real this is. This is a fight. A fight with one's own body. And a fight we have no choice but to accept.
Oh Sarah, I have been in that waiting room many times with my mother. I can tell you that MS affects everyone so differently, and there are so many different types of MS. That man, unfortunately, probably had one of the more progressive types of MS. I haven even known people to have a few flare ups and then nothing for years. It's a weird disease, and I hate it for being so fickle, but it could be worse, right?ReplyDelete