My own experience was….
a ‘diagnosis’ by the ER physician. He proudly TOLD me THAT he’d found it on the ‘internet’! That was a while ago.
I wish more was done to relay info about GBS and CIDP? But, when you look at this site? url-http://neuromuscular.wustl.edu/alfindex.htm-url
Just really LOOK at all the neuro issues these folks must learn and know about? Each time I go to a new doc or for tests or surgeries? I tell them, and you can actually SEE them trying to ‘replay’ their ‘memory banks’ about [I]that[/I]. Likely from year #2? Then the ‘cannot retrieve info’ eyes click on and you know where you are at! Thus you have to be fast or faster than 60 seconds’ ‘attention spans’ w/analogies or descriptions! Enuf to get the doc’s’ brains into THINK mode.
We can try to educate? Best-first with local leaders, sometimes they do move up the foodchain? On the local levels, things like access to municipal, state and federal buildings can improve with your EDUCATION of those locals. Formally or informally. We all know how HEAVY some of those doors are to the balance and strength impaired!
To be honest? Give some docs a break? In that they cannot know more than either their educations and or their experiences. To others who discount you? Those second opinions are cheap compared to your quality of life long term!
I have had ‘students and residents’ come in and ‘meet me’ on occasions. I’ve always kept my onset, progression, diagnosis and treatment tale consistent to the letter! I DO manage tho? To insert the fear factor [if possible] of never knowing WHAT IT IS that I HAVE! That puts all things that’ve happened on a personal level in relating it all to these newbies. I encourage questions and often tell them where to look! Such as sites like this and many others. The NIH research and clinical trials stuffs can and does hit home runs in that research can be done by mere mortals.
Rhonda? I like you, silently chuckle when they do those ‘touch’ tests! I make SURE tho, to let them KNOW my eyes are CLOSED during the tests!
And…the classic ‘duck walk’ thing! Hugs to all!
