Clinical Trial

Posted by on Jul 14, 2012 in blog | 0 comments

Clinical Trial

My neurologist (the headache specialist) told me of a legendary MS specialist who no longer practices but is in research.  She spoke of her as a deity.  I of course called her office where I was told no she doesn’t take new patients, I asked about the research and the secretary knew nothing about it.  For a week of several attempts speaking with many receptionists and being asked ‘Who is your insurance provider”…”Oh Im sorry I can’t help you”  It amazes e how Uninsured are actually treated like lepers. It’s remarkable. When and Why did this happen?  In any case, eventually my persistence wore someone down to give me a number of someone who might know someone…I soon got to a alzheimers research facility and then got the number for the MS research!!!!

I called I got reviewed…they said they were at the end of accepting participants but come in anyway for tests. Phew!  So the last 2 weeks I’ve been poked and prodded, stood on my head, walked, had mRI’s something around 30 vials of blood taken, EEG, EKG’s, Cognitive tests, eye tests, and finally an 8 hour infusion.  (I was told there was a DVD player in the room so I brought Young Frankenstein- but I was so pumped full of drugs I saw only glimpses of the movie through my heavy eyelids…although the nurses enjoyed it!)

The research is studying a new drug called Ocrelizumab.  Its supposed to be the one to beat all others. They give me an infusion of 600mg of Ocrelizumab every 6 months, and I continue with the Rebif injections 3 x a week. One of these drugs is not who it says it is, ONE is a placebo.  but its a double/trip[le blind test so nobody knows.

The very good news is I am being treated by the best doctors in the field, getting attention for my ailments, receiving the best drugs and its all FREE!!!!!

There are still a mile high pile of bills, I also need to relocate to a cooler climate asap, because the average 110 degrees here is a terrible thing for MS (but no worries I can continue my research). Also Keith is working on rooftops in this horrid heat and its killing him slowly….We’re looking at California, cause its just a hop left and the medical coverage is far superior to Arizona.  We were looking at San Luis Obispo because its “the happiest place on earth” and its an average temperature of 60-70 degrees and rural.  I am feeling hopeful.  I know everything will work out. I know I’ll get the use of my hands back and I’ll lick this thing.  It’s such cliche but I really couldn’t have come this far without the support of my friends, family and remarkably SO many strangers! I don’t know how I got so Lucky!

Thank You!!!