No, oops, I didn't make it clear. This is the Neurologist I am talking about, not my GP. A neurologist with experience and reputation for MG. But I don't have a piece of paper certifying that it's MG. Therefore, no one wants to go out on a limb and call it MG. That's why she wants me to go see the super-specialist neurologist at Yale. So it's not HER say so, it's his.

My ophthalmologist named MG six years ago. But AChR is negative, therefore everyone (several local neuros, as well as a supposed MG neuro, and a neuro-ophthalmologist but he was senile, genuinely senile now but the biggest name in the region) said no, or simply passed me off to someone else to have them deal with whatever it is. I have been bounced around more than a pinball ball at the biggest beer and pizza joint in town. "Go to this doc, tell them I said this" "Go to that doc, tell him I said that" "Go to the other doc, tell them I said ..." :"Go back to that doc, tell them I said this" "Go back to this doc, tell them..." None of them tell each other directly by email or records, they tell me to tell them, but no one takes the patient's word for it, yet they then send me onward to tell the next one... Until I get fed up and give up for a while.

Started 16 years ago. What would you say to someone who couldn't stand, still, and talk at the same time, without having to heave a big breath every two words? Who was so exhausted and weak, that after having walked 100 feet down a hallway and down a flight of stairs to the microwave, that she just had to sit there while her lunch got warmed up, sit and lean against something, not even holding her own head up? Who, having to walk back up the stairs and 100 feet back to her desk carrying that lunch, would just sit there, staring at the food because she was too weak to lift her arms and get the food into her mouth? Arms hanging weakly at her sides, unable to lift them to the desk until she rested several minutes? And on and on and on with weakness and breathing problems?

Well, if she's pregnant, you hold your hands up like a cross because "you're pregnant, go see your OB". Only the OB's kept going, "This is NOT pregnancy, go see your doctor." And back and forth like that. And it gets better once you have the baby, but not entirely, and you have no idea what it is for years, until the eye doctor says MG and you read up on it and THAT'S IT!!! THAT'S WHAT WAS WRONG, THIS SOUNDS LIKE EVERYTHING I WOULD HAVE WRITTEN MYSELF!!!! EXACTLY!!!! COMPLETELY!!!!

But, because you're always the weirdest case, you're sero-negative, so you become the pinball ball, just getting thrown back and forth across the system.

When standing gets difficult, I stop and sit. When sitting is hard, I lay back. When arms won't work, I stop. When breathing gets difficult, I stop everything else and breathe. What I read as the "breathing test' of how few words you can comfortably say indicating you are in trouble, well, that's my normal and has been for years. I manage myself, making do with whatever I am capable of at the moment. Sometimes, everything gets put into breathing. Other times, good days, I'm walking the dog through the woods, with lots of sitting-on-rocks-to-rest breaks.

I've been sent, in the past, for breathing tests, but they only present the best run of each test to the pulmonologist, not all of them. So they don't see the patterns, and they don't see how hard I am working to achieve those results.
I have been sent for sleep tests (because if you mention breathing problems, that might mean sleep apnea and therefore a cpap. that's all they can comprehend.) Well, I don't have sleep apnea. But, I do sometimes just slow down and breathe really slow and shallowly. "Yes, we saw that" they said. I asked what it was--no answer. One guy said something like, "well, you may have apnea, but you don't have SLEEP apnea." and sent me out the door because sleep apnea needs a cpap and that's all they care about. (I told you, you avoid the ER or hospital at all costs, around here. It's just not good.)

So, this is a neurologist I'm talking about. Who said, kind of, 'well, I don't think it's MG, but here, try mestinon and let's see if anything happens." Well, stuff happened. People who see me only once in a while are commenting on what a difference, how I'm walking better, looking better. It's that noticeable.

And her abysmal office staff will not cooperate on providing the information needed to get my insurance to agree to cover the MuSK test, have had an inside person at my insurance trying to get the info out of them for 6 months, since she ordered the test for me. Office personnel keep saying, no, we don't need to, we called the insurance and they said the lab was in network. I have someone FROM MY INSURANCE telling them no, not this test, needs pre-cert, and they won't do it. Her office people suck like a black hole. Hoping super-specialist's office will be better and get it approved for me. Tho if I'm sero-negative for that, also, then I'm probably doubly screwed, two strikes and I'm probably out on my butt again.

Just wondering what a typical MG doc does for/with their patients. I'm used to just living with it and managing with it all on my own, as I have for 16 years. But wondering if perhaps I shouldn't be, or shouldn't have to be.

(and yes, when I see super-specialist, I am going to ask if he knows of a neuro a little closer to home, or at least no farther away than this neuro who sent me to him, who might be better to work with. Superspecialist is an hour and a half away, I had to give up driving several years ago, so hubby is taking the day off of work to get me there. Can't do that too often, so I need someone closer for regular usage.)