Re: Help! Your Feedback Desired.

[Guest guest]

Hi Pat, Lucy here, was diagnosed Jan. 11, 2000 by ENT Clinic, 4 Dr.s at the

scene. Both ears were swollen two to three times their size, hard, red, hot

and very very painful! Soon after, I ended up with both ears covered with

clear blisters that you could touch and they would run water! Eventually my

ears went through the same routine one goes through with a bad blistering

sunburn. I have never had anything so scary and so painful as my experience

was with those ears! Now, my nose was just an ongoing misery. I had

noticed a hole in the septum prior to the ears flaring and had already made

an appointment at the ENT clinic. That was also one of the symptoms that

clinched the RP diagnosis when I went in with the ears. Now, there is no

division between my nostrils, just an open space.

I keep thinking that I am trying to flare in my right ear, for the last 24

hours, I have been having chronic inner ear pain, sort of like when my ear

aches began just prior to my ears swelling. I am on 50 mg of Dapsone a day

for prevention. Prednisone is not good for me and I hope that I do not get

to a point where I need anything else.

Hope this has helped you. Let me know if I can be of further assistance.

Love and Prayers, Lucy in North Carolina

Help! Your Feedback Desired.

> Hello all,

> I won't take up space with my symptoms, see message 47948 for that if

> you want ( and thanks to those who gave advice, I still haven't

> decided what to do). However, I would like some feedback on the

> following: If it was your ears that first bothered you, and

> eventually led to your RP diagnosis, what were YOUR symptoms?

> (Did they burn red all the time, part of the time, only at night,

> only in the morning, only after you ran up 5 flights of stairs, etc.

> etc.) Thanks again, Pat Crowly

>

>

>

>

> 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]

Pat, mine started out only with my left ear. It was red and

throbbing and about 3 times it's normal size. It first felt like I

might have slept on it wrong and finally went into a full flare.

However, I would like some feedback on the

> following: If it was your ears that first bothered you, and

> eventually led to your RP diagnosis, what were YOUR symptoms?

> (Did they burn red all the time, part of the time, only at night,

> only in the morning, only after you ran up 5 flights of stairs,

etc.

> etc.) Thanks again, Pat Crowly