Hi, Bert. I'm glad you are finally getting answers - and treatment.

There's one interesting thing about what happens when MG gets really bad, like during a crisis. When you can't breathe well and can't circulate oxygen well, the nerves are affected too. It's a secondary thing and not a primary symptom of MG. Nerves need oxygen to "feel good" too. You can have neuropathy feelings if you are that bad off but it will usually go away afterwards.

I had a severe B12 deficiency years ago and the pattern of involvement of peripheral nerves is feet/ankles, hands and face. It couldn't hurt to ask your primary doctor to test for that, like Becky said.

It sounds to me like the Mestinon may not be enough medication for you. Mestinon helps get us more acetylcholine (ah-seat-ill-co-lean) but does not really help with the reason we have less of it. Some people are on immunosuppressants, some IVIG and some plasmapheresis.

I have days where I can't get around well at all. Others are okay. If I go out and run errands, I am worse the next day but crazy bad the 2nd day after. And, yeah, I guess I look a bit like Frankenstein too!

You have to be VERY careful with things like stress, infection, not enough sleep, etc. Heat is my #1 trigger for making me worse. It is for most people. So be very careful in the spring/summer months.

Since my crisis in 2005, I have taken the word "push" out of my vocabulary. I pushed too hard in the hot weather and the MG pushed back. It'll do that.

Talk to your neuro about all the options open for you. Get lots of information! You can go to www.myasthenia.org for more info too.

I think you and your neuro can come up with a plan that will keep allowing you to brush your dear horse!! Even though sometimes you get a bit worse doing the things you love, it's worth it to keep on doing some of those things. We need a good quality of life just like those without a disease.

I was annyoing with all the questions I asked right away years ago. You need to know as much as you can, so keep asking.

Annie