Well I saw the neurologist today and it was a good visit.
She thinks I am doing well.. which kinda surpised me but I guess in the big scheme of things I am.
She is sending me to an ear nose and throat specialist for my dizziness.. she doesn't think it is MS related because it comes on when I move my head, not my eyes. So hopefully its the bit of fluid that is still in there from my two flus this winter.
I saw the physiotherapist regarding spasticity, which has calmed down now. She gave me stretches to do.
I asked her how I know if the Betaseron is working.. it's been a year now. I asked about an MRI to see if the Betaseron is working, she said she really only orders them when someone is not doing well.
She asked about relapses I've had in the last year... my arm went about 2 months in so that doesn't count.. I told her it's only recovered about 60%. She is pretty sure the current relapse I am having (numb from waist down) is because of the UTI I'm pretty sure I had... it's been 2 weeks now and I told her I'm not real confident the numbness will resolve 100%, she didn't disagree as I haven't had complete recovery from any relapses thus far. Every part of my body has been numb in the last year... but the fatigue is the worst. I am 3 weeks into trying Carnitine.. I think I feel something already, but won't know for a little while yet.
Sorry if this is boring so far.. lol. The interesting thing was she is involved in a clinical trial for Fingomolid.... bad news is it's being tested against Avonex. Her nurse said that would be a step down from my Betaseron as it's not as strong... the other bad thing is you could end up injecting yourself (with the longer needle!) basically for no reason.. as you take the FTY720 pill and inject yourself... so after a year you could find out you were injecting saline into your muscles.
We then discussed Tysabri. She wants me to think about that. Only one person at this clinic is on it so far, but that seems to just be because most plans will not cover it. We are going to see if mine will. I was smart, I asked her if she would switch to Tysabri if she was me. That's when she said "would you feel better about the decision if we did the MRI to see how the Betaseron is working?" to which I said yes. Yay... that will help me decide.
If everything is stable I will stick with what I am doing for now as they don't know the long term effects of Tysabri yet. Her nurse made a good point though.. they treat cancer aggressively, and give MS patients cancer drugs when they aren't doing well which are risky, so why not treat MS more aggressively now that we can. So something to think about.
I hope maybe this long post was somewhat enlightening.
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron