Myasthenia Gravis question?

Question

Hi all, my mom has been suffering with MG for 7 years. Ahe is 48 years old. Her case is severe, and she enters into crisis at least once a year. This spring she underwent an experimental treatment at John Hopkins in Baltimore. They use chemotheropy to reboot the immune system. Has anyone had this done? I would like to get in touch with someone who has shared her experience. I would like to get my mother some support. Right now, it seems like some of her symtoms are coming back. She has a Dr apt next week and they are unable to provide contact info for the folks that have had the same procedure.
Thanks so much and all the best.

Answer 1

Hello...

I have generalized MG, but have not had a hospitalization-level crisis.

I was blessed by a quick response to Cellcept. Have they tried this one with her? I am not in remission, but doing much better.

http://www.myasthenia.org/information/CellCept.htm

I have NOT heard of chemotherapy used purely to shut down the immune system. There are plenty of immuno-suppressant drugs out there that can be taken in large enough doses to do the same thing without the awful side effects, I would think.

Yahoo! Answers doesn't have many MGers. I'd suggest contacting the national support group and finding out if there are others in the network going through your mom's problems.

http://www.myasthenia.org/

Here's examples of the sorts of information you can get on the site:

If your mom has been taking any of these meds, she'll have to clear her system completely of them before undergoing chemo...
http://www.myasthenia.org/information/Cyclosporine.htm

http://www.myasthenia.org/information/summary.htm

Internet-based support group:
http://mgfa-mgnet.org/html/index.php

Answer 2

Do a web search on" Myasthenia Gravis Support Groups.

I generally use: www.ask.com for getting information.