Re: Welcome to the group Anne

[Guest guest]

Anne

Welcome to the greatest group of people you will ever have the chance to meet. Feel free to ask all the questions you like. Someone here will help you find the answers if they don't already know them. There is so much knowledge here and they are all so terrific.

I live in Oregon and I am 45 years old. I have had RP for over 8 years and lead a fairly normal life. I still am able to work and take care of my family. Sure I have my bad days but now that they have me on the right meds you wouldn't even know I had RP if you didn't know me personally.

Lots of love

Glenda

new member with intro and (of course!) questions

Hi, everyone! I've just joined the group, as I am almost certain that I have RPand could really use some support. My name is Anne, I'm 34-years old, anduntil I had a baby a little over a year ago, I was a picture of good health.Since that time, I've developed many "mysterious" (to the doctors)symptoms, some of which two ENTs have told me indicate RP.Specifically, I have periodic "blisters" (swollen, painful, crusty areas)on my ears. My nose hurts, and I also have red, painful eyes.My opthomologist thinks I just have "dry eye," but some ofmy other doctors (I've now seen 3 rheumatologists, all ofwhom think I may have some disorder that is currently "subclinical")say it could be Sjogren's. So, this brings me to my first questions:1) What rheumatologists do you know of who are both knowledgeable aboutRP and helpful? I live in NC but would go anywhere to consult withsomeone who can confirm my suspicions and tell my husband that I'mnot just "paranoid about my body."? I know about Dr. Trentham. Has anyone seen him?What did you think? Who else might I go see? Has anyone seen the doctor atVirginia Mason in Seattle? I want to find out about the most current treatment optionsfor a young and previously healthy person like me.2) I've read about antibiotic treatments for various autoimmune disorders andhave run across comments about them showing promise for treating RP. Has anyonein the group tried this therapy or know anything about its effectiveness?I'm sure that's plenty for now. I look forward to getting to know you all and willprovide whatever support I can to my fellow RP'ers!AnneDISCLAIMER!!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