One month later

Maybe these symptoms are somehow hormonal. Who knows! As much as I love to test, retest, and test again..removing variables as best I know how, this human lab rat is rather tired of the game call MG. Yes, I'm sharing my frustrations because they are real, and it is healthy to share emotions..all of them.

For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)

I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.

Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.

Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.

All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.

So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.

Humbly yours Lord.
Rachel