Welcome, AnnaMarie. I'm sorry you're going through so much.

The first thought that popped into my head was whether you've been tested for Lyme disease because of the migratory pain. Has your vitamin D been tested? That can cause pain too.

Did they put you on a drug for gastritis? Antacids can make anemia worse because iron absorption from food decreases. Are you on an iron supplement? Taking it with vitamin C will help with absorption. Don't take at the same time as calcium/vitamin D.

Have they tested you for pernicious anemia?

Your doctor probably did the very basic PFT. What you need to assess your breathing is FULL PFT's, including MIP and MEP which are specific for neuromuscular diseases like MG. Perhaps you could make an appointment with a pulmonologist.

Did your doctor specify how much Mestinon to begin with? A lower dose like 15 mg. or 30 mg. is often recommended. He should've been more specific. Did he talk about any side effects? Take it with food to help with any possible gastric side effects. If you don't have MG, it may make you feel weaker, so it might be a good idea to have someone with you when you start taking it. It kicks in after about 30 minutes and wears off in about 3 hours after taking it, though it's often sooner.

Your symptoms do sound like MG. If you get weak to the point of not being able to move well, breathe well or swallow, it's time to dial 911. Even if you're not diagnosed, the best place for you is in the ER. DO NOT try to drive yourself in!!! EMT's can help facilitate care and get you to a doctor more quickly, which is what you need if you are weaker from MG.

You don't have to have ptosis to have MG. Have you taken pics of your face when you are doing better and when you're worse? You could have it and not know it. A neuro-ophthalmologist can assess that well and if you have double vision.

Write up a medical alert card for you purse that has your name, insurance info, doctor names and numbers, conditions, drugs, emergency contact, etc. Make sure you put down that your neuro thinks you have MG.

If you do have MG, you need to take it easy. Heat will make MG much worse. I hope you will get the answers and the care you need soon. Let us know how it goes with the Mestinon! Take care.

Annie