OK. I just found this a Cleveland clinic site so feel that it is credible to use (see below). I have only one of these symptoms consistantly, cognitive problems. Of course there is the confusion of exhaustion vs fatigue. My pulmo said that the pulmonary stress test proved that my weakness was not the type of fatugue seen in CFS or Fibromyalgia. That test was done 5 months before I had the big big flare that was called a possible MG crisis and all this began.

"According to the CDC, at least 1 million Americans are believed to have chronic fatigue syndrome, marked by disordered sleep, cognitive problems, headaches, joint pain and profound exhaustion."

http://www.cleveland.com/healthfit/i...ome_study.html

So I am wondering. So I print this off and send it to my univeristy docs and point out that I dont have these symptoms? I had sleep issues when I was first seen there in 06 but after the vit D deficiency was diagnosed and I treated it that went away and never returned (thank heaven!!). Now I mentioned at the last appointment that I had head pain but it is not a headache that it is strain from my weak neck. I said it had been worse in the last couple weeks. I said I am not a headache person. I told the student docs this as they did pretty much everything.

Any thoughts?

I discovered that the last neuro had not written her report yet so I had the thought of calling and noting that the swallow test was not Endoscopic as they thought and was 2 years ago so my doc was ordering a new one. Maybe there is still some room for truth and reality.

Annie59

Well, Annie, my thought is that doctors don't like patients telling them anything, especially not arrogant ones. It can actually make your care worse. And it's always best to approach a topic like this one in person, to get a "feel" for if they are open to the info or not.

Trying to get a doctor, who has made up their mind about you, to change it or to think differently is nearly impossible. And you don't exactly have the energy to do it.

Again, you need a good, kind doctor who won't dismiss the existing evidence and who will try to figure out EXACTLY what is going on.

Annie