My neck got weak as MG symptom. Neck brace helped. As I got stronger all over my neck issues improved. Therapy never helped weakness from MG. It was only as my MG improved that I was able to exercise.
Be careful
I once had a therapist.....no twice....that exercised me almost to death.
She kept thinking breathing would improve with breathing exercises....WRONG
ha

Plasmapheresis helps my neck pain and weakness and I support it with a neck pillow in between times.

It's not the usual thing a therapist sees, so they have to understand MG and that you only exercise at your strongest (when your Mestinon is at its peak or your MG is under very good control). If it's weak because most of the muscle is not getting the message, it will only get worse as you exercise as Ann was pointing out. You can only strengthen muscles that work. b.

Ann's warning is spot on. Not that I have much experience, but the one thing I do know is you can't let the PT run you ragged.

I had a PT when I was in the hospital that was just amazing. She didn't know me, I have no idea what experience she had with MG. But she kept an eagle eye on me and told me to slow down, sit down, or stop talking when she could see my symptoms escalating. If your PT isn't like this and tries to push you, either make them understand or find a different PT.

You've got to know your own tempo and how much your body can handle. There are PTs out there who specialise in things like MS that may be more able to work with MG patients more effecitvely and with less detriment.

A neck brace helps me a lot, because if my head hangs too much it makes my old neck injury flare. The PT said as long as I'm not depending on the neck brace, using it only when I need it, it's beneficial. In the car it helps a lot because my head tends to fall backward or to the side, but I use it for that about 80% less now that I'm on mestinon.

I think the best way to say all this is MG is a

Pain in the neck



haha

Yup - take care, when dealing with PTs. Many PTs will try to run you ragged, if they do not have an understanding of MG (or other neuromuscular diseases).
The PT world is often oriented - towards dealing with recovery from accident or stroke.
Not so much, in dealing with a debilitating neuromuscular disease like MG.

This was helpful as I have not been on this journey very long and didn't know how to respond when it was suggested I go to PT etc.
It sounds like a good idea but I tried a massage a few years ago and things were fine until she found "a spot". And kept working it until I was ready to jump off table. That really cured me of all of that. I so
Appreciate all the posts. You can almost take something from all of them. Even tho someone is struggling and my heart goes out to them, I take solace that when I am having a bad time, I can get through it
Because so many of you are warriors. I can ask "dumb" questions
And some nice person will take the time to explain. I could not go to Pa for my grandsons first communion and he said he understood.
Ah. I've stopped going to church and mostly stay home. Can't drive,
And doing the whole get cleaned up thing is an all day affair. I am not complaining , just commenting. My hat goes off to all of you who work and have kids. Again warriors. Yea MG team!! Karin

I thank you all for your answers I am going to go but with the understanding for what I have. If he helps me feel better just for a while it would have been worth it.