NeuroTalk Support Groups - Words with my neurodoc

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Words with my neurodoc (https://www.neurotalk.org/myasthenia-gravis/208054-words-neurodoc.html)

Angell, Okay, I admit it . . . I'm a total geek. A closet one, though. It's not too popular to like quantum physics or Tesla's work or plasma cosmology. And I sometimes refer to my breathing tanking as a core meltdown. ;)

Those are very good ideas. Did you know that plants have feelings? At least that's what studies showed when they hooked them up to a polygraph to see if they reacted when they "felt" threatened. Pretty interesting stuff. I would want to know if plants NEED a rest, like we do.

Did you notice how fiber optics were a big deal in the early 80's and then they disappeared from any news? The energy companies don't like new energy ideas, because they wouldn't make enough money! :cool:

Do you only take MG meds? Are there other meds? There could be an interaction between them and/or any food you're eating. Some drugs do have food cautions (i.e., grapefruit). Are you a restless sleeper? MGers who are more active while sleeping are using their muscles and making them weaker. Could you have sleep apnea? Is it a blood sugar issue? Just throwing ideas out there.

I know you weren't yelling! ;)

That is the one aspect missing from doctoring. Okay, there are a LOT of aspects missing, but this is a key one. Once a patient is diagnosed with a chronic illness, they should be "prescribed" a seminar on it! So many diseases are complex and managing them is not as easy as, "Here's a drug, enjoy your life."

Lupus, for example, often has regular group meetings within HMOs. It seems that the more well-known diseases have that in place, but not MG. MG can kill a patient, or at least mess them and their life up really good. It should be taken more seriously and have a management pamphlet at the very least.

There are some MG meetings around the country, but you'd have to seek them out. How many MG patients fall through the cracks and don't know that hot weather could kill them?

I like the way your mind works, Angell. That's what I love about this forum. The people here are so interesting.

:hug:
Annie

Quote:

Originally Posted by angell (Post 1088989)

Well things didn't go extraordinarily well with my neurologist today.

He asked me how things were going and I told him.

"Poorly. I think. Because not only do I not know what to expect because you haven't told me - for instance, the heat will exacerbate MG, and so I've had to discover this on my own and not know whether to attribute it to heat or something else; but I don't know what the new normal is."

Then he rolled his eyes and got that smug look on his face that likes to land there. So I asked him about it.

"Do you have a neurological condition yourself?" I asked.
"No," he said, in a perfect rendition of a defensive tone of voice, "why?"
"Because you roll your eyes at me a lot when I'm asking you questions and I was curious if some physical condition caused it or it was arrogance."

THAT went over well.

"I studied and worked at Duke where we had 600 MG patients..." It went on for a while - be glad for ellipsis. Then it was my turn. I'm not going to spare you the ellipsis - sorry.

"My turn. I speak five languages. I have degree's in mathematics and physics and graduated summa cum laude. A freshman project I turned in was commandeered by the Pentagon and I did a stint as a consultant for them. I was published in a mathematical journal as a sophomore. I've had two books published. I have been asked to give presentations to both the FBI and the APA, ironically on reading body language. I am also a member of Mensa.

"If you can't speak to me without speaking down to me, then please send in your nurse and have her talk to me."

First time I wasn't told to make a follow-up appointment. Hmm... wonder what that's about? ;)

Oh well.

I agree, neurologist's are a different type of doctor. Very few are knowledgeable of MG. Most of them are more interested in themselves, than the patient. Unless you are limited to the availability of Neurologist, find another one. I have had 7 different ones in the past 7 years.

Good luck, and don't give in

"I studied and worked at Duke where we had 600 MG patients . . ."

Oh Yeah? . . . . Duke? . . . Never heard of it!

Oh Yeah? . . . . Name one!

Oh Yeah? . . . . How many escaped a Myasthenic Crisis?

Oh Yeah? . . . . Duke? I thought Duke was a penal institution!

Oh Yeah? . . . . You sound like you have the heart of a true healer to me sir!

Oh Yeah? . . . . Only 600?

*admin edit*

Any additions . . . ?

-Mark-

I totally agree. You are my hero also. I will have to remember this on my next appointment.:Bow: