So much for my gut

I'm not going to lie, I did not have a good feeling about this last Chicago trip. I came very close to canceling it a few times as I felt like it was just going to be another disappointment for me that I really did not feel like dealing with.

A little background to catch up any new people (or those of you who may have forgotten how we got to this point).....

I'm taking part in a clinical trial run by Dr. Richard Burt at Northwester Memorial Hospital. Here is his website if you're interested. Anyway, in 2010 I was randomized into the "control" arm of the study, rather than the treatment arm. Control basically means you take Tysabri (an FDA approved drug for MS, supposedly the best out there right now) and get rechecked at predetermined intervals. Treatment is a stem cell transplant (currently the only thing showing any promise as a cure for MS). Needless to say, control was a disappointing group to be in.

The interesting part about this study is that there is an ability to cross-over from the control to the treatment arm if your disability score increases and stays that way after a 6 month period. This is where all my frustration has come in. Not to completely rehash all this, but basically I think the doctor who does the EDSS is completely inconsistent and, well, frankly, I think he is an idiot. So I've been in this weird holding pattern with Dr. Burt, having me go back to Chicago multiple times where I keep getting told that, no, I'm half a point away from being able to cross over.

So this leads me to this week. Another quick two day trip to the windy city by myself, which I was really not looking forward to. And then it happened. The EDSS doctor (oh, did I mention he's the only blinded participant in the study?) gave me a higher EDSS...way higher, actually. I mean, I know I've progressed and acquired some new symptoms, but I didn't think it would be much higher...not that I'm complaining.

I'm now tentatively on for an April/May stem cell transplant! There is so much to do and think about now, the most important being MONEY! (Stay tuned for more info on that)

I'm back home now, exhausted from my quick trip and barely any sleep the past 3 days, but feeling, for the first time since I began this clinical trial, hopeful. It's not a bad place to be in.




P.S. Just don't ask me how I'm going to stand being away from Mason for 2-3 months. It's going to seriously be the hardest part of this whole ordeal, I'm sure. I just have to remember that he's a major reason I'm doing the trial in the first place.