@lucillex3, my doctor is doing what she can, but the VA medical system doesn’t work well were conditions. They don’t like to cover the cost of transporting people to specialists, especially if there are none near.
The neurologists here told my doctor flat out they don’t have the training for it. Not being a specialist herself, she is limited on what she can prescribe. I have painful spasms going down my back, trunk, and legs as I type this. Today has been pretty rough. It seems likey body has a conspiracy theory about my meds today.
There are times when it affects my lungs, and at any time it could give my heart a squeeze. It is a fickle condition, changing all the time. The attacks can just happen at any time, or triggers can bring it on. The triggers can be a sound, being startled, a touch. We fall down a lot. Muscle groups can go hard, inflexible like beef jerky, and might stay that way for hours.
It is an exhausting condition. Five minutes of the jerks and pulls can be equal to circling a block at a dead run.
The hardest part is knowing I will probably never get better. To see improvement or cure, there would have to be some medical breakthrough.
My doctor has been better than most. At first she told me it was some made up internet thing to sell pharma. I showed her one of the videos. She has been researching information on her own since then. I am grateful she took me seriously.
I wish I could go to Bethesda and see that doctor in the video.