Kristi, IVIG all depends upon the doctor (and what insurance you have). There's a lot of paperwork to be filled out for IVIG. Some patients can get IVIG on a regular basis, some even at home. So there's really not a yes or not answer to that one!

There are MDA clinics around the country, which you can find on the MDA site. One of those doctors (in Florida), who is an MDA director, is Dr. Allan Weiss in St. Petersburg. He is an awesome doctor. There are more, but I don't know them like I do him. They often have MDA days, where an appt. is free.

If you can become stabilized, then taking trips should be okay (with precautions). If you vacation where the weather is hot, then you should stay out of the heat as much as possible. Heat can make MG exponentially worse, and quickly. Just in case an MG patient becomes worse on a vacation, you should know ahead of time where the emergency centers are (if there are any). Scheduling naps in the day will help allow you to do what you want.

But know that this disease can surprise you, even while on meds. A person can do something on one day, and then become worse in the next two days. You have to give yourself time to know what your normal is.

If you can buy one, an oximeter can be a useful tool to know how your breathing is doing. I know what my normal is, and when that becomes too low, I can either rest more or see my pulmonologist to assess breathing more. Since everyone's (people without MG) breathing becomes weaker at night, an MG patient's breathing can be even weaker. Some patients have sleep apnea. An overnight oximetry or a sleep test can help to determine what is going on at night. I say all of that because one's O2 can go lower in a plane. Breathing can be more difficult. Hypoxemia is a heart and brain risk (don't freak!). That's why they monitor the heart during an MG crisis.

Thanks for posting, Anna. That's a beautiful piece of art! I'm a designer (among other things), and really appreciate how hard it is to produce any work. Also, thanks for the info for Kristi.

Here is some other general info about drugs. Cellcept is kind of like taking water for many people. Imuran works better for most, but the neuro needs to run the TPMT test before starting that drug.

TPMT testing before azathioprine therapy? - PubMed - NCBI
Thiopurine Methyltransferase, RBC

Rituxan is a more potent drug, usually used for MG patients who have tried other treatments without a good enough response. That drug has been working for patients, but no treatment is without risk.

I hope your neuro knows about all of the different treatments. IVIG is obviously a preferred treatment, due to no immunosuppression. But you have to think about the damage to veins in the long run. Sorry, kind of scary and gross, but a reality.

I hope others will share their experiences with you. There are some Facebook groups for MGers, but I'm not on Facebook, so I can't direct you to them. Our site has become very quiet of late.

Only you can decide what is best for you and your life! These are big decisions. I'm sure you will know what you want. You sound very intelligent and determined.

I would like to give one caution. Don't let MG fool you. A person with MG can become so weak so slowly that s/he can think nothing of how they are doing. When I had my crisis in 2005, I couldn't squeeze the urgent care doctor's hands. I thought I was squeezing them really hard! It's always best to have some measures of how you are doing, whether that is ptosis becoming worse, O2 going lower, not being able to hold your arms out in front of you for long, or anything else. I say that because once someone is on a treatment, they can tend to think they are "normal" again and go back to pushing the physical envelope.

Have a great appointment!!!

Annie