Re: Digest Number 2688/ Sunshine

[Guest guest]

Hey Sunshine,

I know exactly how you feel and I wrote a letter to the rheumy I saw at Mayo today telling him so. I'll send it to you privately if you want to read it. lol But they pissed me off too. I think they need more education on RP. How, can we ever get it across to them we know what we are talking about??? Don't give up, know we are here for you.

Love,

Lu

Here i am getting frustrated...has any of you every been frustrated with doctors?@#?!? Dr. Michet says my symptoms are atypical of RP...no ear flares, blood work normal, 6 months a long time for a flare. ENT says my larnyx looks normal and agrees with rheumy, maybe i am having muscle spasm/inflamation around throat area. Next step a PH monitor to wear thru my nose down to the spincter muscle at the end of my esophogus ( a mere 24 hours!). I am to eat and act normally (yea, right). This is to measure how well my meds are working (if) for acid reflux (GERD). You all know, of course, i don't want RP, so this is good news, but sure don't want o get out of here with "nothing'" and no treatment as a diagnosis.

Sunshine not feeling very sunny