Re: New member/ mail was sent to wrong site, so I'm enclosing it here.

[Guest guest]

Well, I know that I, too, was told that it probably wasn't an autoimmune

disease because my labs were all normal. This just ain't so... I think

many here have said that despite a serious flare going on, they had normal

labs. RP is just as my rhuemy says, " a really weird disease. " My pcp, God

bless her, just looked totally confused when I told her that the RP had been

confirmed by 2 different rheumies. She just shook her head and said, " But

all your labs were normal! " I guess this is where education and the RP

foundation come in. If more doctors knew what to look for, we wouldn't have

such a time getting a dx. I had all the classic symptoms, EXCEPT the ears.

When the ears acted up, then they knew where to look!

Anyway, I hope that you don't have RP. But if you do, you won't find a

better place to ask questions and get support. This is just the BEST group!

Kathleen (Tx)

New member/ mail was sent to wrong site, so I'm

enclosing it here.

> Subj: [Polychondritismed] Pending RP Diagnosis & VERY anxious!

> Date: 2/5/02 10:18:11 AM Pacific Standard Time

> From: birdiea@... (a_birdie2000)

> Reply-to: <A HREF= " mailto:Polychondritismed " >

> Polychondritismed </A>

> To: Polychondritismed

>

> Hello:

> I actually found this group last August, when my ears (both sides)

> became swollen and the specialist said I might have RP. However two

> weeks later, the Dr. said: " Not so, you're lab results are all

> negative " .

> Needless, to say, greatly releived, I stopped persuing any info on

> this disease.

> In Dec. I developed a VERY bad " cold " , which 3 wks. later finally

> required antibiotic treatment to get me through Xmas.

>

> By Jan. 3/02 I had VERY SERVERE soreness of the throat, antibiotcs

> again,,,,,,no sucess.......then wheezing, laboured breathing, etc. &

> Dr. sent me from his office to hosp. emerg., (afraid my airway might

> close off with swelling). My throat was scoped etc.

>

> Long story short sent home on prednisone for one week, off it for 2

> weeks to the day & right back to Dr. presenting with same symptoms.

> My family Dr. now thinks I may truly have RP & is sending me to Eaar

> Nose Throat specialist (Feb.26/02), & is sending report from

> specialist who " diagnosised POSSIBLE RP " last July for him to review

> BEFORE he exams me the end of this month.

>

> I took my last Prednisone (50mg.) today (7 day course), & I still

> definitely feel " a rough LUMP in my throat " , My sinus feel full-

> nothing there to blow out, & my voice " comes & goes " .

>

> I am worried, frustrated, & eager to learn ANYTHING I can, from those

> who may have " walked my walk " . I do believe in the " medical world " ,

> doing as your Dr. asks (IE: taking meds etc.), but I also truly

> believe in HOLISTIC HEALTH, in that we should do whatever we can to

> better our " lifestyle "

>

> I am a grandmother, we live a quiet, " comfortable " life. Are there

> changes I can make in my diet, exercise,(very limited I must admit!),

> environmental etc?

>

> Any help you can give me would be most appreciated.

> Thank you.

> Sent on the wings of a Robyn!

>

>

>

>

> 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

>

>