I also live in a rural town. It is a 3-4 hour round trip to see my neuro. MG is a very rare disease, most neurologist have never seen a case. You need to find a neuro very experienced with MG to get the proper care. I would suggest going to a large teaching hospital and asking for a neurologist that specializes in MG, neuromuscular diseases or diseases of the neuromuscular junction. That is how I found my neuro, he has a lot of MG experience. If you post what town you live in, other member can suggest neuros in that area that they had very good experience with. At large teaching hospital, they do the less invasive thymectomy where they go in through the rib cage.

It does not sound like you were on an effective dosing of mestinon and you are having a lot of side effects with water retention from the pregnisone. I take 60 mg of mestinon 3 or 4 times a day and 180 time span at night. Too much mestinon can send you to the ER with breathing problems too. I am currently weaning off pregnisone and taking 35 mg a day.

How much pregnisone are you on? Are they weaning you off it yet? There are non-steroid immunosuppressant that work well for MG like cellcept and imuran.

The first thing you need to do is get a referral to a well-experienced MG doctor. Large teaching hospital usually have an 800 number you an call and a medical concierge to help you find the right specialist. I had to re-evaluate my entire life and activities around my disease but I have found a schedule and routine that makes my life manageable. That process will take time. But you need to listen to your body and pace yourself. Assign task to your hubby and daughter that are the most draining. For me that involved going up and down the stairs and lifting my arms. My daughter does all the carrying of groceries, carrying the laundry and taking the food to the table.

Find a good comfortable chair to rest in that supports your head. Rest and do not feel guilty about resting and having others do the work. Keep us posted on your progress and take any breathing issues seriously. Let us know how else we can help you.
MG is manageable, but it takes time to find the right combination of treatments that will work for you.
kathie