I am soo glad that you kept at it!
It’s long and hearbreaking and mind boggling at times? To make it worse? WE the patients, don’t have a clue about the medical ‘politics’ going on behind the scenes!
I got my BEST last opinion fast! W/the head of a respected neuro dept? And the tests he did while I was there [mostly the VIALS of blood] and subsequent tests I could do more locally, I GOT IT! One good thing tho? My current neruo [who diagnosed me] and the neuro [who treats me] are in communication! My neuro is a lecturer at my digagnostic neruo’s teaching facility! That EXCHANGE in diagnostics is ongoing? That is a super thing!
The whole thing took me a year of hard work, lots- no, heaps of tests. Bloodworks, scans and more. Then even more! Fudgsicles! I am now a completely TRAINED patient!… It’s served me well when other med issues popped up and Docs and Techs alike always look at me in amazement. Thing is… Being good at being tested? Isn’t always easy, AND… definitely not fun! Plus it takes a longer while than YOU WANT! But, if you keep your patience hat on, and keep plugging? You can get somewhere closer than where you were in the beginning!
I’ve never seen POSTED FEEs anywhere, and I wrestle with this for silly reasons… My insurance company has me on their ‘red’list or the like? As I’ve always got problems with some billing by some providers, and THEY are always truly funky problems… w/the providers, not w/me. I’m just lucky to use them?
Any non flaring bouts of pain? Are gifts to me! I’ll take them as that, and worry about the consequences later. Relief is just that, A ‘let up’ if just fine with me, if and when it happens.
These days I’m just trying to get around and get on with life! HUGS TO ALL!!!! Keep faith that you can get an ultimate diagnosis and treatment…
Records! What they write about you that you don’t know about! BAH!!! And worse… I just wish they were more transparent about THIS? So we could TALK about the WHYS of such changes in attitude…and have a chance to sort things out… before it damages any disability chances down the road…
I truly don’t know HOW one could approach a neuro about THIS? Any body got any ideas?
Hugs to you Elmo, and to all others here!