[AnnieB3]

Jana, I haven't heard from you for quite a while. I hope you're doing okay. If not, I guess this will be for naught. Or not, if other people have some input.

You know very well the difficulty of being in a situation with MG where you can't do other treatments. Whether they're too risky, contraindicated or any number of other reasons, I can't do anything but Mestinon and rest unless I go into a crisis. Oh, and Free Trade coffee.

Tonight, when I couldn't spin my salad because my arms gave up after four pulls on that easy string, I literally fell apart. I had gone out yesterday to get my hair done. That's it. Now today, my MG is bad. My definition of bad is O2 saturation not getting above 94% while lying down, having to lie down until your legs feel like working again, waiting for your brain to become alert so you don't hurt yourself more while doing something, not being able to talk and breathe at the same time, blah, blah, blah. Typing this took a lot of resting.

What goes though your mind when you get to this point? The bottom line for me is quality of life. Now, I know some of you might say that "trying" IVIG would be worth it if it helped that quality of life. I'm sorry but it's so beyond contraindicated that my life would be worse rather than better if I did. Same with steroids. I'm already on inhaled steroids from asthma, probably from taking Mestinon because it started after I started taking it! Or plasma. Going into too many details is not comfortable for me to do on the Internet, so I guess you'll have to trust me.

It's really hard not to feel utterly defeated every day. I have great coping skills but things are getting ridiculous. I'm "okay" as long as I don't go out but it always amazes me how on edge my "okay" must be since a little activity weakens me so much.

No lectures, guys. I've discussed all of this with my neuro, internist and other doctors. They agree and my neuro came to those conclusions about no other meds on his own. I am just bringing this up because I need support for a change. And because a conversation with Jana would help and I might get some suggestions from everyone else too.

I am so incredibly sad right now. No, that doesn't help MG either. This is my life but at times like this I can hardly feel good about it. For those of you who know me, you know how positive I am, grateful every day, and how well I can normally deal with anything.

Any MG suggestions, beyond meds, to make this better? I NEVER ask for support unless I really need it. I'm at that point where a person wants to give up and that's certainly not in keeping with my Norwegian, tenacious character. But, honestly, I'm not who I was and never will be.

No pity party just one of those times when it's all too much. Thanks.

Annie