Hi. Welcome. I'm glad you're here and asking questions. Your fiance is so lucky to have your support.

I have a few general answers to a few of your questions.

I am diagnosed with MG even though my blood tests came up negative. I was diagnosed on the basis of my SFEMG--but not until my third one. I don't take Mestinon. I am convinced it doesn't help me, though it helps a lot of MG patients. On larger doses, it makes me twitch, and it gives me cramps in my eye muscles. Like your fiance, I don't have droopy lids or double vision.

Mestinon can make MG symptoms worse if you take too much. What is "too much" varies wildly from patient to patient. How much was he taking? Did he try a much lower dose?

MG can certainly affect the hands. As for throat pain, that is not typically on the list of symptoms, but MG messes with the muscles, and strained muscles can cause pain.

You ask if a person can have MG and not be fatigued. The answer is not really (unless it's only ocular MG)--but a person can be fatigued and not realize it. MG fatigue can be so general, and creep up so gradually, that you don't know you have it. You find yourself wondering "Why am I so lazy?" and "Why don't I feel like doing anything?"

One more thing. This may or may not be MG, but you and he must be very, very careful. Trouble swallowing is considered a medical emergency. MG can tank really fast--it can go from "gee, I feel worse today than usual" to life threatening in an hour. If he is having trouble swallowing, he needs to let his neurologist know right away. If it gets worse, he needs to go to the ER. If he starts having trouble breathing, he needs to go to the ER or call an ambulance. I don't mean to scare you, but MG is unpredictable and can move really fast.

Prednisone can make MG symptoms worse for a couple of weeks before it starts helping. If he is starting Prednisone now, while his symptoms were already worsening, you need to take the symptoms very seriously. I know this is hard--you seem to be saying that he doesn't like to talk about how bad it is. But he needs to know.

Please feel free to ask more questions. It's helpful to us to feel helpful--we like to see that some good can come out of our experience with this disease!

Abby