Quote:
Originally Posted by DesertFlower
koilover,
The information I was given by my neurologist and that I have learned from personal research is different than what you stated above. My neurologist only recommends the thymus removed if there is a tumor and he said that only a small amount of people with MG have a tumor (I think he said less than 10%).
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I'm not sure on the numbers for how many people have a tumor on their thymus or not, but there is definitely controversy about whether to remove the thymus if there is no tumor. I was pushed towards getting my thymus removed by my first neurologist, even though I don't have a tumor. Unfortunately there's just not a lot of solid research out there about treating MG. It's mostly based on retrospective studies. They're trying to fix thatby doing more clinical research, and there are a number of randomized controlled studies currently being done, including the thymectomy trial that Codie is in. There's a website for that study - unfortunately I can't post the link because I don't have enough posts, but if you do a google search for "MGTX study" it should come up.
If you want to find out about other MG trials, go to the clinicaltrials.gov website and do a search with myasthenia gravis as the key word. There are 5 or 6 (or more) currently recruiting, and several of them involve new drugs.