Neurologist check up day, NYC specialist

Neurologist check up day, NYC specialist

Going to the neurologist are usually a bittersweet day. I really like my neurologist in the city, she is a wonderful doctor. I honestly couldn’t ask for more compassionate, caring and understanding for MS.  That being said, there’s limits to what could be done for me. Since seeing her regularly I’m on my third MS drug that I started back in September, which is Ocrevus.  I can say that I was on Rituxan prior to this and the changes only made for insurance purposes, it’s really close to the same drug. You can read a true comparison in my blog here.

Ocrelizumab (Ocrevus) versus Rituximab (Rituxan)

The problem with me has been the same problem since 2014, I am not stable. My MRI’s don’t show any new activity but I  continue to get worse and there is nothing that can be done to stop it. This is the progression of the disease and for me, it keeps progressing. Month to month, year to year, I continue to decline in my functionality. As I decline, it causes new problems and challenges in my life.

This past year has probably been the hardest and I’ve seen the most significant decline and change. I can’t get up off the floor if some object or person isn’t there to help. My walking with a walker has dropped to maybe 50 feet total. I can’t walk un-aided at all.  I can’t rely on just someone’s hand for more than a few steps. Driving I still have no problem with but getting in and out of the car is an issue. I can’t get into an SUV. My arms can’t go over my head, for any period of time, which made exercise difficult. My numbness in my hands seemed to spread through my forearms. This is just some of my list but it’s significant enough.

The visit to my specialist today offers me no hope. There is nothing that comes out of this visit that makes me feel better. I list my symptoms, my new symptoms if any, and my symptoms that are acting up that haven’t been. She does a few tests, makes some notes. Times my walking, which I’ll discuss in my one year on biotin post and that’s it. I leave feeling sad and depressed because she either sees what I feel or worse she doesn’t. It’s never a good day. My step dad who takes me knows this and I’m happy to say he understands and respects how I feel when we leave the office. It’s a 2 hour bumper to bumper ride home. I don’t even want to go.

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