I too have not heard of that condition. But I see my neurologist on Friday and will ask what she knows about it. She diagnosed me with ocular only MG, after I had told her I was at times having trouble rising from a chair, and apparently disregarding what I told her about swallowing problems, problems shuffling my feet, not being able to pick them up, and sphincter muscle weakness. So, I’ll be anxious to hear what she thinks now that the muscle weakness has become more generalized and pronounced (she discounted much of my reports after conducting an extensive nerve conductivity test that she indicated proved that I only had ocular MG). Perhaps the condition your neurologist suspects you may have woul explain the apparent contradiction between my experience and her tests. More after my session on Friday.

Debbie, not a satisfactory situation. For many years we had only two neurologists in Ithaca, one of whom was worthless. But, that has changed for the better: now there is a whole new group, one of whom is a socialist in MG and she is my physician. However, given the experience I described earlier, the Jury may still be out for her. She is very knowledgeable, but I worry that she knows the textbook solution to many problems and doesn’t listen to the nuances you, as the patient, describe. My feelings about her will depend on her responses during my next visit.

Very interesting. Not something I've heard of either, but will ask my neurologist when I see him. It will be another new term to learn about!

Debbie I have never heard of this before. I wonder if this is another way of saying that you might be in remission.

Oh Debbie, I'm so sorry to hear about your struggles with your neurologist! As difficult as MG is, I can't imagine having an unengaged neurologist as your primary medical support for it! Prayers for you and others having to deal with this unacceptable situation!! Sending virtual hugs your way. ❤️