Help! RP or not RP?

[Guest guest]

Hi everybody, I'm Sue from Boston and have been a member of the group since

April when I was diagnosed with RP. I was also the one having trouble getting a

referral from my HMO to someone who sees RP patients. But here's my problem: do

I really have RP?

I was diagnosed by Trentham in April, who many of you know, who sees a lot of RP

patients. But my HMO/PCP refuses to accept the diagnosis. I've been in a flare

of " whatever " since March, up and down now 3 times. I've had " whatever " for 20

years, with a 12 year remission and increasing to chronic status of late.

Trentham gave me a NSAID and colchicine which helped the symptoms but didn't

stop the flares. When I told Trentham that my HMO refused to believe the

diagnosis, even he seems to be more cautious about it. So's here the symptoms

of " whatever " :

sinus pain

inner ear pain with vertigo, dizziness

rib/chest pain (this is definitely costachondritis)

larygeal inflammation, hoarseness, throat constriction, gagging

shortness of breath

arthalgia of migratory type

flushing of face, low fever, fatigue

sometimes: my eyeballs feel swollen and get very bloodshot

sometimes: nerve pain, intention tremors, dark spots in vision

once or twice: my outer ear turned red

So the problem with my diagnosis is that the outer ear/nose thing is mostly

absent but I certainly have the long list of RP symptoms. At my diagnosis and

during this last flare no test has been done on me except ANCA, which was

negative. I've been tested 8 and 20 years ago and was negative for DNA

antibodies and for rheumatoid factor. I'm very tired of feeling bad and want

some resolution. Some of the symptoms are scary, like the vision, tremors and

breathing difficulty. My HMO wants me to see their rheumy but the first

appointment in in mid August! I filed an appeal for a referral to Trentham and

found out yesterday that I was awarded a referral for six visits.

I would be interested to know how many of you have flares not involving the

outer ear or nose or have any other advice for me. Any of you that started your

symptoms more with the sinuses, ribs, throat or arthalgia? Thanks, SUE