Thanks for the advice

[Guest guest]

Hi Pat,

Welcome to the RP group. I too have lots of ear flares.

As far as the blood work goes, there is no blood test for Rp,

and you can have normal blood work and still be flaring.

Sandy

Just wanted to thank you for the advice and your personal stories. I will have more prednisone tomorrow (2x20mg) to take me up to the appointment with this Rheumy next Friday. The nurse did tell me on the phone that all my tests have come back negative, I suppose that's good news, although I wasn't aware there were any concrete tests for RP. Is there anything I should ask about tests for this appointment with the rheumy? Thanks, PatDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Pat:

Before my diagnosis they ran at least 2 sets of tests looking for lupus & other autoimmune problems all of which came back negative. After I was diagnosed with an ear flare my rheumy told me that it is very difficult to diagnose & that it won't show up on the battery of tests they do. How unfortunate that we have to go through so much before they find it. I went through flu symptoms, facial, eye & nose swelling, uveitis & iritis of the eyes which caused permanent damage until finally my ear flared. It is so frustrating but at least now I'm being treated. Good luck & glad you found us.

Susiecue