The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Wednesday, March 07, 2007

Today I went to my neuro to sign the forms for Tysabri. We again went over the risks and the probability of those risks. The risks of PML are 1 in 1000. Allegedly, those are the same risks for MS (though some believe it is more common than that, as people go undiagnosed). My thoughts are, if I have something for which there are 1 in 1000 odds, then I am likely not going to be "lucky" enough to make those odds again. If I am, take me to Vegas baby!

He said I can stop taking Rebarf, er I mean Rebif. That means for now, no more shots. Woot! He is hoping I can start in the next couple of weeks. He said we would do frequent MRIs to monitor lesion activity (which could mean PML, rather than MS in this case). Something I didn't know is that if PML is detected it can turn itself around if the medicine is stopped. I thought you were always screwed--and that isn't always the case, thought it is rapidly progressing and can be difficult to detect. My doctor told me things to watch for, but really, considering my immune system is not modified by other medicines or a disease such as AIDS, I feel confident.

When I told him that my feet were numb and have been for a couple of weeks, he said, "This is why we need to get you on something different." He is not happy at all with how Rebif has been working for me. While my flares haven't been serious there is combined brain lesion activity with physical symptoms. Therefore, it's not keeping everything under control.

Now, I am waiting to coordinate my insurance and other resources to help alleviate the costs. There are programs in place that can help with that. The medicine itself is $2600/month, leaving me to pay over $500. Add to that the cost of the hospital staff and supplies for the infusion and it's a nice chunk of money--one I don't have.

I feel confident, however, that I will be able to work things out. So now, it's just to the waiting.