Pulling teeth for support

Ok. So where do I start?

I was diagnosed 8 years ago after a 6th nerve palsy in that left my left eye unable to turn all the way to the left landed me in the hospital the day after thanksgiving. The ophthalmologist on staff ordered the MRI that got me admitted, and a few days later the spinal tap confirmed it. They put me on a course of steroids, and sent me on my way with a diagnosis and a few brochures. “Pick a medication and find a neurologist”, they said, offering no additional help. I was 23.

I spent the next 6 months pretending that it hadn’t happened. My family and friends knew, of course, but I avoided finding a neurologist or looking into medication options. My eye resolved, and I was fine. 6 months later I had my second attack- this time I lost some strength in my right leg the left me limping slightly and a little unsure on my feet. The flare-up didn’t last long, but by the end of it I had found a neurologist. As the leg issue resolved, I lost a small amount of vision in my left eye (my neurologist laughed at me- my vision went from a 20/15 to 20/20). They put me on my second round of steroids at this point and started me on Avonex.

I experienced some of the flu-like symptoms following my shot in the beginning, but pretty quickly everything adjusted and I was totally fine. My vision came back soon after, and for the next 7 years I was completely relapse free. During this time I moved to Chicago, sold my car, was promoted at one job, went through a rough breakup, changed jobs, and went back to school. I maintained my bi-yearly neurology checkups, and had intermittent MRIs.

Once, about a year ago and a half ago, my MRI came back with new lesion activity. There were no clear symptoms associated with the activity, so my neurologist an I opted to stay the Avonex course and recheck the MRI again in 6 months. 6 months later the MRI was quiet, so we didn’t change anything.

About 3 weeks ago I started experiencing some numbness in my feet. Through the next few days the numbness spread up my legs, over my stomach and back and in my fingertips. We did another MRI that showed 4-5 new lesions, and my neurologist recommended a change in medication. Interferons, she said, were likely no longer working. She recommended I consider Tysabri, Gilenya, or Tecfidera, and ordered the JC antibody test.

And again, despite my being an active patient with a neurologist at Northwestern Memorial Hospital, I was left alone to decide. I’ve attempted to reach out to MS support groups online (through NMSS), as well as in person, and all I’ve gotten were crickets. My neurologist’s office, I’m sure, is sick of hearing from me by now.

So. Here I am, unsure what direction to move it. I’ve been relapse free for so long that Tysabri seems like an aggressive recommendation. Does my neurologist see something on my MRI that hints at a changing of the tide?

It’s the unknown of the disease that’s rough. No one knows anything, or can tell you anything, and no one knows if anything works.

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