Thank you, Annie. Your story makes a lot of sense to me. Thank you for telling me how you made these decisions. It is very good for me to see someone else acting with plain old common sense--taking all sorts of things into account and doing the best you can with the information you have. That's what I'm aiming for.

There is so much to weigh in making treatment decisions, and we have to weigh all the factors knowing full well that there are unknowns. I think, for example, I made the wrong decision years ago when I opted not to have my thyroid killed with radioactive iodine, because I think it was the relapse of my Graves disease that brought on my MG. So, in the end it may have been the wrong decision--but it was NOT a mistake. I say that because it was a reasonable decision based on what I knew at the time.

I am impressed that the experiences you had with the doctors haven't left you angry and bitter. Your past experiences--and the present ones of some other forum members--astound me. I constantly remind myself not to take my good medical care for granted: here I am with negative blood tests and atypical symptoms, and I have not only been taken seriously, but I've been diagnosed. Ever since I started having these symptoms, my biggest fear has been (I know this is stupid, but there it is) not some horrible degenerative disease like ALS, but being told my illness is psychosomatic.

I really appreciate your telling your story. I have a big decision to make, and it is a help to reflect on exactly what I'm doing here. If the decision turns out to be wrong (I mean if it has bad consequences), I will try to be at peace anyway.

Abby

Abby,

You are not the only one who becomes a geek over charts and graphs. They are helpful in seeing things, I find that same correlation between activity and symptoms, so other things too, but that and stess are my biggest MG symptom triggers.


As for me, I'd rather learn to live with MG that attempt any other drugs beyond Mestinon. I have a history of having bad reactions to drugs, so I avoid them as much as possible. These stronger drugs for MG need to be considered thoroughly to be sure that the benefits outweight the risks, for me the risks are not worth it. We are all different, I'm sure you will make the best decision for you, but do make sure to read in detail about all the risks of any drug before starting to take it. I wish the best for you.

I think that both Annie and DesertFlower have touched on an important factor in the decision of how to treat (or not) MG. It's what you might call a profile, made up of past reactions to drugs in general, susceptibility to infections, general states of health. It's a little hard to put your finger on, but when DesertFlower says "I have a history of bad reactions to drugs" or Annie says "I have issues with easily getting infections"--those things may not be quantifiable, but they're hugely important.

I am probaby going to try the Imuran. I have a different sort of profile. I tolerate drugs very well--none of the sensitivities, bad reactions, or trouble with side effects that I often read about--and my immune system is generally so strong that I feel it's less risky for me than for some to compromise it with an immunosuppressant. I am also worried about other autoimmune diseases, like MS, down the road. I also have a relatively mild case of MG that is presumably more likely to respond to the Imuran.

So, this could be a disaster, but even if it is, I'm feeling like this is a reasonable decision. Not a "correct" one--there's too many variables to be able to pin that down!--but a sensible option. It's rather scary, though...

Thanks, guys, for talking with me about this. It is helping me clarify what exactly I'm doing and why.

Abby