Today went very well, and thank you for all of your prayers!
Dr. Wolfe turns out to be a very sharp man, and focuses on MuSK MG! I've never been more excited to have someone tell me I'm a 'classic case.' Sounds fairly average in my book! Turns out, I'm one of 17 or so MuSK MG cases Dr. Wolfe has seen in TX. All are women, with onset in their early decades (20s/30s). Pretty cool, eh?
For those new to this craziness, Myastenia Gravis (MG) is a rather rare autoimmune disease, in which signals from nerves are interrupted, before reaching their intended muscles. These muscles are mainly located in the upper body, neck and head/face. MG affects 2-7 out of every 10,000 people in Western countries. It occurs about 1.5 times more often in women than in men. Of those effected, 15% have a variation of the disease related to an antibody that fights the muscle-specific kinase (MuSK) protein. How 'bout them apples?
We talked about my MG history, and what treatment options are actually available to me. We discussed steroids, an immunosuppressant (Prograf), Rituximab and pheresis. As much as Lee and I were excited to hear more about Rituximab, it turns out I'm really not in a good place to try this. It has a 2-3 month ramp up period, and you can't/shouldn't have pheresis while taking it. At present, there is no way I would last 2 weeks without pheresis, let alone 2 months. So, of the remaining options, we will be moving forward with the immunosuppressant and continued pheresis with hope this drug works on me. Dr. Wolfe shared they've used this with a few other MuSK(ies - my word :) ), and had success. The ramp up period ranges from 2-4 months. We'll see!!
What a blessing to meet one of the men behind so many MuSK MG studies today, and to have him understand exactly what's going on. Unsolicited, he commented pheresis treatment 3x week is no way to live. AAAAAAMEN!!
We'll be working with our neuro in Austin, Dr. Horvit, on next steps and getting started with this newer drug. We'll return to Dallas for a visit with Dr. Wolfe in 3 months. In the mean time, pheresis must continue. As of writing this, my speech/swallow is labored due to all the chatting I've done today (me, chatty?), and my eyes are crossing. This just makes the next week that much more exciting, right?
Lee has been a rockstar and my angel! I love him dearly and am so blessed to have him by my side! Did we mention we're getting married? Date TBD, but most likely early 2011.
Time to rest these crisscrossed eyes... G'night All..and may God richly bless you and protect you. May you let His love fill you up!
Rach
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.