new member with intro and (of course!) questions

[Guest guest]

Hi, everyone! I've just joined the group, as I am almost certain that I have RP

and could really use some support. My name is Anne, I'm 34-years old, and

until 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 of

my other doctors (I've now seen 3 rheumatologists, all of

whom 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 about

RP and helpful? I live in NC but would go anywhere to consult with

someone who can confirm my suspicions and tell my husband that I'm

not 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 at

Virginia Mason in Seattle? I want to find out about the most current treatment

options

for a young and previously healthy person like me.

2) I've read about antibiotic treatments for various autoimmune disorders and

have run across comments about them showing promise for treating RP. Has anyone

in 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

will

provide whatever support I can to my fellow RP'ers!

Anne