Hi Everyone, I'm Diane, and am quite new in this community (although not to HealthUnlocked), and while I've commented here and there and been following for a few weeks, I thought it was time for me to take a minute and introduce myself to the group.
My MS story started in the summer of 2015 in a very atypical (my middle name) manner. I had been struggling with symptoms of a connective tissue disease for about a year, but had few neurological symptoms or red flags up to that point. One day after work while simply standing on my back porch looking out over the pond, all of a sudden my legs just went out from under me. My son came running over to see if I was alright, but from that instant on, I was definitely NOT alright. I couldn't balance and had difficulty walking. It felt as if gravity was shoving me down into the ground and I needed support to steady myself.
Over the next week or two (it's all a blur) things continued to worsen and I slowly but surely became completely incapacitated. I needed help to hold my head up to eat, help to walk more than a couple of wobbly steps, and life as I knew it came to a screeching halt. It was hard to hold a book up, and I couldn't control my legs. I was terrified. An MRI scan of my brain showed many white matter lesions (around 2 dozen) in a distribution highly suggestive of MS, and a scan of my spinal cord revealed one lesion at C7. However, a lumbar puncture was negative, and my clinical presentation was not at all typical for MS, so my neurologist has been restrained in rendering a diagnosis. The rheumatologist managing my CTD and my neurologist/MS specialist met to review my case in more detail and agreed that both conditions may have been triggered by exposure to an adjuvant. If true, they wanted to wait and watch for awhile before introducing potent drugs into my system, so treatment was mainly supportive. They hoped that sufficient time away from some type of exposure might allow my immune system to kick in and restore some function.
Gradually, the neurological symptoms did indeed show remarkable improvement. My balance returned fully, I regained control of my legs, and recovered the ability to walk, although I cannot walk very far, and I don't feel "normal" when I walk. My neurologist says that the diagnosis is still somewhat unclear but that it is either MS or MS-like, and looks more like PPMS than RRMS on MRI scans. There have been no new lesions or activity since that first "neurological event." Because both specialists feel that B-cell depletion therapy would be very well-suited to my constellation of symptoms, they settled on a PPMS diagnosis and are preparing me for a trial on ocrelizumab. I am apprehensive, but hopeful. I will keep you posted on how things go.
I'm looking forward to getting to know you all, it seems like a wonderful group of members here.