Susan, Thanks for posting these.
I like cold hard facts too but I still find studies like these deceptive. It's not very clear, you know what I mean? Yes, they say that 35% experienced drug-free remission (1st article) but they don't say for how long. And it was done such a long time ago.
The second article is even less clear. The fact that mostly women had a thymectomy is curious. It sounds like they must have an "alogrithm" for who to perform them on that might include mainly women. And a small percentage of patients reached drug-free remission and we don't know how long that lasted. With MG, you never know if it is temporary or not because the disease is only "on vacation."
There are some studies that speak to quality of life, which I find equally as interesting. MG is only ONE component of someone's quality of life and well-being. It involves so much more than what a disease takes away from you, including state of mind, financial situation, ability to cope with stress, etc. It's not all "interconnected" with MG.
http://www.ncbi.nlm.nih.gov/pubmed/21082698
Here is the "MG-QOL15" list. After filling it out, I realize that my "QOL" is in the toilet. As if I needed a checklist to know that.
http://publishing.yudu.com/Library/A...esources/5.htm
Hit "their" print button on the page to get it printed. It's 7 pages long. They also have treatments listed and other relevant info.
I also like looking at any articles the Oxford guys have done.
I think it's really useful for us to browse PubMed from time to time. But what is more useful would be new drugs/treatments, nicer neurologists and more useful testing like photographs of our faces. Outside the box thinking and treatment helps me more than studies.
I have to wonder how the odds of remission with MG is in comparison to the odds of winning money at a casino. It all seems like a big crap shoot.
Thanks.
Annie