Friday, February 25, 2011

MuSK+ MG

Well I learned a new word in conjunction with my MG today, and it could NOT be more fitting. I'm looking up Rituximab, which seems to be the logical next step for me in my MG treatment. It says that Rituximab (Rituxin) is used on refractory MG. So you should know by now, I'm looking up refractory in my Synonym Finder (the second best book every written, after the Bible)!

Here are my favorites: stubborn, uncontrollable, obstinate, bullheaded, willful, and headstrong.

Now, those of you who have known me for a while are probably peeing in your pants. If anyone in the world would have stubborn MG, it would be me. The irony is NOT lost.

Therefore, I have decided to apply my obstinance to finding the best treatment for me. I've read of 2 cases so far where MuSK+ MG has gone into complete remission using Rituximab. I'm also asking anyone I know who either has MuSK+ MG, or knows someone who might, what their treatments are, what works for them, what doesn't, etc.

Many that I've read about had been doing pheresis. However, whereas I was going every 3 weeks, these folks were going three TIMES a week. I cannot imagine that. Of course they would have ports, or fistulas, or some kind of veinous catheter, not use use their own veins every time like I had been.

It's quite irritating that so many articles are blocked unless you're a doctor, or belong to some medical association. Patients want information too for crying out loud!

So I will put my plea here as well: If you, or anyone you know, has MuSK+ MG, please leave a comment here, or contact me through my blog and I will get back to you. I would love to know what's working for you, if any of you have tried Rituximab (Rituxan), and if it worked. Thanks!

1 comments:

Nicole said...

My 21 year old daughter was just diagnosed last month with MusK pos MG. She is scheduled for her second IVIG transfusion next week, I'm scared for her and sad for her. I am glad to have found your blog. (I homeschool my first grade son)