I have issues with easily getting infections. That and the fact that I have had a few allergic reactions to antibiotics doesn't really make me a good candidate for immunotherapy. Plus our family cancer history of adenocarcinoma (GI tract cancer that spreads). They wouldn't do a thymectomy for the same reason, although I'm not convinced that a thymectomy would "work." I've never liked the idea of carving into a body. Sorry, just my opinion. After surgery in 2004, I got celiac disease two months later. I don't think that was a coincidence.

Also, after my MG crisis in July 2005, I got folliculitis from the damn steroids. Had to have antibiotics and then got clostridium difficile. I wouldn't even wish that on doctors.

As far as IVIG, the concerns are similar. I wouldn't mind trying either IV or subcutaneous IVIG but my body reacted to IV Benadryl once, so I'm not really hopeful about that either.

Plus the neuro drama, being red flagged, blacklisted and generally pooh-poohed, plus one neuro covering his back side because he was WRONG by dismissing my concerns about MG and then getting his other "pals" to do the same.

I was diagnosed with lazy eye when I was ten (1968). It wasn't lazy eye because lazy eye is permanent by then. And they thought only my right eye had it when, in fact, both eyes had fatigable weakness/ptosis, as did my eyebrows; which is clearly seen in my K-12 photos. I discovered that in June 2006. I was diagnosed officially in February 2001. A neuro-ophthalmologist said I had ocular MG in June 2000, two months after seeing my first MG expert, the one who dismissed me and began all this nonsense. My modulating antibodies were positive in March 2002 (almost positive in April 2000) but the neuro did not tell me about that, did not give me the results, I didn't get them when I asked, he later dropped me as a patient and "terminated" me from the clinic. Why? Oh, come on, you know why!

I didn't find out about the positive test results until I read that neuro's notes right before I sent in medical board complaints. If I hadn't decided to do that, I may never have known about that. The clinic he used to work at said that the test never existed. It wasn't in my chart, that's for sure. So I dug around and called the clinic who ran the lab, got it sent to the Schwarzenegger clinic and then they sent it to me. Good grief.

I had no idea I lived such a sordid life.

I have accepted that my life is about compromise. I should've had a Bi-Pap since 2005 (my MG crisis) but that's another story. I survive on Mestinon, afternoon coffee and common sense (most of the time). I would rather not be in a doctor's office or the ER every other week from infections or other complications, so I won't even try the other drugs unless I have to, like during another crisis. Too much doctoring trauma for one lifetime.

So, is that enough info? It's such a personal choice but it should be a highly informed one. Read those drug inserts. Think about what it would do to your life in very real terms. Then you'll make the decision that is best for YOU.

When my dog got pancreatitis in July 2008, my health started taking a downward turn. Due to his prescription, high fiber/low fat canned diet, I live an unpredictable life, often getting up at night to take care of burps (gassy food, that high fiber) and poopies. It's like having a newborn baby. It's what makes my MG tank the most - the lack of sleep.

Good luck in figuring all this out. It's not easy having MG, let alone deciding how to deal with it.

My former internist back in 2000 said, when I first discovered that I had ptosis, "Why would you want to know you have myesthenia (his misspelling, not mine) when the treatments are worse than the disease." Not exactly up to a doctor to decide that.

Anyway, hang in there. Things could be worse and usually are.

Annie