Re: Help, More Advice Please. (Was- Should I go to Emerg? )

[Guest guest]

Hi Pat,

You need to find a new Rheumy IMO.

There are no blood tests to confirm RP. My blood work is always " normal " .

I also get the white spots on my ears sometimes during a flare. My right ear

has permanent damage and is always painful to the touch. You do not have to

have nose or throat involvement to have RP. We are all affected differently.

Sandy

> I'm having similar,but not nearly as bad, episodes as you. Here's

> some background, I am indeed searching for advice!

> Since mid-november I've been getting burning painful red ears

> nearly every night. It usually starts sometime between 6:30PM and

> 11:00, I often fall asleep with one or the other still burning. (It

> is bilateral, though it doesn't always start with both) Today it was

> earlier unfortunately, I was at work, it started around 4:30. I have

> one white spot on an ear rim, I believe I have 2 other white spots

> that are just starting. I also have been somewhat dizzy for about a

> year or so. Sometimes my ears feel like they must have fluid in them.

>

> I should add here, my ears are overall very sensitive now.

> Touching them is pretty much a no no. If I get real hot, they're also

> probably gonna start burning. However, they do burn painfully

> independent of any contact.

>

> I am frustrated. My original doc said I had auricular chondritis.

> (I also have a thyroid condition and very iritable guts)She put me on

> a small dose of prednisone and sent me to see a rheumy. I'll try and

> make it brief- Rheumy don't think I have RP. However, she is at a

> loss for why my ears burn. (She likes pointing out that the tests

> came back negative.) She sent me to an ENT and put me on Naprosyn and

> something called Entex. They did tests at the ENT and told me I was

> fine just that my hearing wasn't all that great for a 33 year old

> man.<G> ENT, said I didn't have RP as my throat and nose were fine. I

> held my temper in check.

> Saw Rheumy one more time, she still doesn't think I have RP and is

> just hoping it will go away on its own. She also said, although very

> far fetched, that maybe I have a food allergy though she didn't

> really think so. I'm now on no drugs for the ears,(though I have been

> popping ibuprofin when I feel one of my ears start to burn, it really

> isn't helping I fear) and have no doc appointments scheduled. What

> do you all think? This sound like RP or something else? I'm

> interested in your opinions and advice.

> Thanks, Pat Crowly

>

>

>

>

>

>

> > Hi there:

> > I still haven't been formally diagnosed with RP. Since Jan./02 I've

> > been on Prednisone 50mg/day for 7 day stints, (then off till

> throat,

> > ears, joints, whatever swell again), 4 times!!

> > This last time (I took last Prednisone Sun. Feb. 24/02)I've been

> very

> > ill wvery day since I stopped the medicine.

>

>

>

> DISCLAIMER!!

> 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]

In a message dated 3/6/02 5:28:52 PM Pacific Standard Time,

pcrowley@... writes:

<< They did tests at the ENT and told me I was

fine just that my hearing wasn't all that great for a 33 year old

man.<G> ENT >>

Pat, is sure sounds like RP to me, but I'm not a dr. I would be worried

about the hearing loss. THat goes along with the RP. Have you taken any

medical articles to your drs? Please make an appt with someone and let us

know what you find out.