Hi, Susan. Welcome! I read your story. Sad to say that many people go through a similar process with MG. I'm sorry you went through all of that!

I know there are some Facebook forums, but I'm not on FB. Can someone here direct Susan to those groups? There are ones I've looked at that are not current, don't have good info, and are not support sites.

Once someone has a crisis, it takes longer to recover, especially without the right meds. Does IVIG work for you? Are you still on Mestinon? Any other drugs? You might need an immunosuppressant.

For those of us who can't live a "normal" life, being isolated really sucks! I'm glad you are using creativity to keep yourself engaged! That works for me too. But finding others with MG to speak to helps a lot.

Do you take naps? That can help with strength as well. Staying cool while you do anything, such as having a desktop fan blowing, is good too. You obviously know, after reading your story, what hot weather does to us!

Have you been tested for a B12 deficiency? Many people have that and a vitamin D deficiency. Doctors should know that many of us have more than one thing wrong!

I'm glad you've found a balance in your life. But you may need more care. I hope your neuro and you will discuss if the treatments you're on are good enough. Take care!


Annie