I'm 34 years old. The doctor called me at about 7pm a few days before my birthday to tell me. This was in March. I guess the radiologist' report from my mri came in then and kind of freaked them out.
I ended up having 8 days of solumedrol, the neurologist wanted to admit me after 5 but there was no one to take care of my kids. I have brain and spinal lesions. He got me on a trial of ampyra, 2weeks into that I can walk a bit better. My family dr wanted to get me a walker before, so I have improved some.
I've also been doing physical therapy for 3 weeks, and she thinks I have improved, so that's good. Tremor on my left side is bad, but a little better than it was. I still have bad balance issues, I'm always looking for something (wall, chair, anything) to touch for balance. I look drunk. I limp too, my left leg doesn't bend like it should, plus the shaking and the balance. It stinks.
The neurologist has me starting tysabri on the 21st. The insurance co wanted me to try and fail copaxone and rebif before the plegridy that he prescribed first. He thought trying and failing 2 drugs would leave me disabled. He got biogen to subsidize the tysabri I guess. He thinks I need aggressive treatment. I am jcv negative, but I'm still scared.
I am really, really sad about it all. I just think why me? and start tearing up. I'm sorry for the long sob story. Hopefully I get better than I am now somehow.
I ended up having 8 days of solumedrol, the neurologist wanted to admit me after 5 but there was no one to take care of my kids. I have brain and spinal lesions. He got me on a trial of ampyra, 2weeks into that I can walk a bit better. My family dr wanted to get me a walker before, so I have improved some.
I've also been doing physical therapy for 3 weeks, and she thinks I have improved, so that's good. Tremor on my left side is bad, but a little better than it was. I still have bad balance issues, I'm always looking for something (wall, chair, anything) to touch for balance. I look drunk. I limp too, my left leg doesn't bend like it should, plus the shaking and the balance. It stinks.
The neurologist has me starting tysabri on the 21st. The insurance co wanted me to try and fail copaxone and rebif before the plegridy that he prescribed first. He thought trying and failing 2 drugs would leave me disabled. He got biogen to subsidize the tysabri I guess. He thinks I need aggressive treatment. I am jcv negative, but I'm still scared.
I am really, really sad about it all. I just think why me? and start tearing up. I'm sorry for the long sob story. Hopefully I get better than I am now somehow.
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