Jan, one thing I learned this past year is that DR.s not only will focus on a specific symptom, they will often see and fixate on another Dr.'s "impression" even after it is contradicted by tests.

Example: Mayo referral's impression included Bilateral Carpal Tunnel (he was convinced of this) and Peripheral Neuropathy. Both were ruled out...had been repeatedly in the past also, BUT, the DR.s after that saw that and that's what they said, "well you have.....PN and CTS."

Fortunately, to save time and trouble, I carry my own annotated copy of relevant records and could pull them out and say no, I don't, here are the Mayo EMG/NCV results...saves the Dr time, lol.

I had this happen too often, and with good Dr.s, but the more docs and tests and referrals are involved, and the bigger the time gaps between appointments, the easier it is for them to miss a page in your records, to inadvertantly fumble the ball, but that ball is our brain so we have to pick it up and run with it.

We have to not only have our own copies, we have to have read them BEFORE we see the DR. in case he hasn't seen them (like my 5 O Bands) so we can gently and respectfully get them SEEN!!

Back to seeing symptoms though, that paraprotein, lambda light chain thingy is what did me in last year, so I know what you mean...docs saw that and some of them forgot the big picture...ME!

Don't let them forget you.

Tante:

Thanks for posting this. After 30 years since first symptoms and still in limbo it's not hard to relate.

You were credible all along. The doctor who dx'd you 30 years ago before MRI's and all the technology was credible too - back then doctors relied on the patient's accounts, signs and symptoms and their gut reaction.

I'm not too far behind you in age - still waiting to get some credibility myself. It makes perfect sense that it was a relief to get confirmation.

Best of luck choosing your course of meds and treatments.