I was diagnosed in February after optic neuritis in November. In the interim, I had all sorts of MRIs, a spinal tap, and of course lots of blood work. I have lesions on my brain, neck, and spine, and the spinal tap came back with bands. I am also Type I diabetic, and have been for just about 30 years (I’m 43). I don’t like this.
The neurologist wants me on meds. Ok, so I tried Tecfidera and had a terrible experience. So, now I’m nervous about others, but I’ve been reading around and I trust the docs, so ok, I’ll try something else. Gilenya starts tomorrow.
I don’t feel like anything’s wrong with me. My eye is still sore sometimes. It comes and goes. Apparently, the optic nerve swelling has gone down, and they don’t know why it’s sore.
But what exactly is an exacerbation and how will I know if I have one? I know everyone’s different, but still… I feel like I’m going crazy. Are exacerbations serious enough that I wouldn’t be able to chalk it up to something else (like being in my 40s)?
In the past I have taken students (I’m a teacher) on a study abroad, but I have to plan this at least a year in advance. Should I plan one for next year?
Why are there these meds that might reduce problems, but maybe, we don’t know for sure? And they’re strong, strong drugs that cause a host of uncomfortable side effects, and yet the benefits outweigh the costs?
Seems like a lot of crap when I don’t know that I feel badly (but might? probably will? in the future). That’s pretty unnerving.
I appreciate any input. I’m glad you’re here (well, there).