MK, I'm sorry about the treatment being delayed. I hate to say it but I can see their point - they are probably afraid of being sued if you don't have definitive proof of MG. It's a heavy duty drug.

About the breathing tests, MIP and MEP can vary from day to day. It's really hard to say for certain if your readings were due to doing too much in one day or an overall downward trend. If your breathing is steadily getting worse (via symptoms) over time, then that might reflect an overall worsening. But with MG, it's hard to tell for sure because of the variability of it.

MaxAir, which is not as "strong" as Albuterol, does not get me as shaky. I can't do Albuterol.

What did they do to confirm MG? Did they miss something? Did they do the MuSK test? Could something else be going on? I'm not doubting you at all, I'm just wondering what you could do to "prove" this to the insurance company, etc. Has anyone done any other testing to see if something is making things worse like a thyroid condition, B12 deficiency, etc.?

Does your company have short or long-term disability? Look into that.

I have to be honest, working with MG can be really hard for some people. With MG, the more you do the weaker you can get. So then the more treatments you need. It can be a tough trade-off and decision. I tried over and over again to work but to no good end.

Do you have a tape recorder? Can you record a message for the 911 operator just in case you can't talk or breathe? Maybe you could press a button and let the machine talk for you if you are alone and get into trouble.

I hope you can work things out. It may be worth a fresh set of eyes on your situation. Have you tried getting a consult at Mount Sinai?

Be careful and let your docs know if you get worse!!!

Annie