The past week has been a doosie! On Thursday of last week, after visiting Dr. Wolfe in Dallas, the double vision was starting. The difficulty chewing/swallowing/speaking caught up quickly. Today, the 1-week cycle is wrapping up. My vision is trying to be single, the swall/chew/speak is almost clear, and breathing is close to clear. I say 1-week cycle, but who knows why the symptoms have been so strong lately. Could it be that we came off cellcept, and maybe it was making a difference? Could it be that I keep pushing the limits too far, when times are good? Could it be related to hormones? Who knows..but what better time to start a new drug and really measure results, right?! :)
Today we had a follow up visit with Dr. Horvit here in Austin. We reviewed the Dallas visit and next steps. He's in agreement with everything and we'll get started on the new med (Prograf) tomorrow. This is another immune suppressant, so I'll have to avoid grapefruits, raw fish, sick people, etc. In celebration of this, we're going to have oysters tomorrow night...just before the start.
It may take 3-4 months, but here's hoping and praying that by the end of the summer, we'll start to see a decrease in the need for pheresis treatments. Keep checking in...we'll keep ya posted!
xo
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.