I didn't have diabetes, heart, cancer issues prior to my onset either. I, too, went thru the 'UM DER WHAT?' round of round-robins. Only my own instinct that what I was being TOLD was not connecting to the 'goings-on'! I got lucky, in the speed of my diagnosis, in that I kept pressing, other, unrelated docs...also considering the doc-speak of 'does NOT compute!' route. Then getting lucky-with getting appts. with top Docs! That it took only 14-17 months from initial diagnosis [incorrect, but close] to real diagnosis and treatment...well. just says to all: DON'T TAKE NO FOR AN ANSWER!
WE KNOW when something is plain old 'not right' with your own body and how it works! That some docs discount us is unconscionable. These turkeys are NEVER going to be censured to the point where a serious 're-education' or any 'sensitivity' training will occur.....unless we are very LOUD and constructively GRUMPY! Heck, it's a start.

How do we do that? Two ways...from the TOP and the BOTTOM of the various food-chains...to the point they meet. Yeah, it's often called 'advocacy', either the one-on-ones or the broad brush strokes...I plain old call it EDUCATION! We each know at least 5-10 people who really know of OUR condition...they, can let another 5-10 know... like a chain letter? BUT, if we don't speak, speak up, speak loudly. Who is gonna know?

I have had 40-60 doc appts in the past year. I have had to either educate or summarize my PN issues to each of at least 20 docs in the past year. It's scary that I've had to do this. My thinking is that PN aspects are rampant nationally [whatever the 'causes'] but generally go unrecognized/undiagnosed/under-rated. That I have to give a 37 second summary to an ER docin a manner that that doc gets THE POINT is down right frightening...especially as PN can affect autonomic systems soo quickly! Such ignorance should NOT be allowed! Yet, it is. Who IS our adovcate? ARE they really working well on our behalf? OR Should we have to create another organization competing for the non-profit bucks in ever short supply? I don't know- but, gotta tell you, MS folks 'look OK' too...until... Go figger?

Hugs and good minutes, extending to more for all! - j