Originally Posted by AnnieB3

Hi, Rachel. Mestinon (pdf below) can possibly make you sweaty, but I would suspect the Prednisone. Is there a reason why the Pred was increased so high? Or were you talking about Mestinon when you said 60 mg? It is nearly impossible to withdraw from steroids. And an increase in steroids can make MG temporarily worse.

Going to school and raising two kids is rough for healthy people! Medications don't necessarily put you back to a normal state. We have to manage activities with rest.

Have you spoken to your neurologist? Is that person an MG expert? I'm really surprised that you are on all of those meds with negative antibodies. Did they do any other tests? Now, if you have the antibody tests again (AChR, MuSK, or LRP4), the results could come back negative due to the immune suppressant you are on. You probably have MG, but they should have made sure of that before giving you all of those drugs.

What does of Mestinon are you on? How often? The drug only lasts about two hours. Adjustments in the dose spacing might help. But you don't want to overdose on Mestinon either, resulting in a cholinergic crisis (too much acetylcholine).

Since your children are teenagers, might they not pitch in to help?! And paper plates are great for when you are worse (no dishes). You really have to look at your life and what you can change to adapt to MG.

Since you were diagnosed in February, you haven't been through a hot summer yet (unless you live below the equator!). You can't allow yourself to become too hot, or MG can get exponentially worse. Cooling down right away if you do is essential.

You could try sipping on cold water between bites of food. You could also try a cool washcloth on your jaw/neck to help those muscles. Managing MG is an art form, and that can take a while to do!

I hope you can find a way to balance all of what you do, and having MG. Please take time for a conversation with your neurologist, and discuss the issues you are having.

Annie