dx without external ear and nose chodritis

[Guest guest]

Marilyn,

RP external ear involved dose not affect the ear lobe. The lobe dose not contain cartilage.

As for how I was dxed without external ear or nose involvement it took a lot. The standard for a dx of RP includes having 3 of the 6 problems listed in the McAdam's and collegues' diagnosis algorithm.

Which is general accepted.

* bilateral ( or just one side) auricular chondritis

* nonerosive serongative inflammatory arthritis

* nasal chronditis

* respitory chodritis

* audiovestibular damage

and histologic confirmation

Out of these I had the respitory chodritis, which includes broncitis, laryngitis, pharnygitis and hoarsness. All of which I am extermely proned to.

Nasal chondritis included non allergic rhinitis, sinusitis and congestion. Also a major problem.

Almost all forms of ocular inflammation are included. I have scleritis.

Audiovestibular -this is a very broad range of problems, Mine is deafness in the left ear, losing the right. Vertigo and balance problems. Nausea, vomiting, headaches.

And I have the arthritis portion also.

All of the above problems I have had since about the age of 12. But the respitory problems started there course very early.

There are more problems that RP brings then the six catagories. But those are the ones that the dx is usually made off of. Because I did not have the external ear and nose inflammation some doctors ignored the dx and just treated the symptoms. This caused the destruction of my left hearing nerve bundle and the destruction of the lumen in my trachea. In '97 it was reconfirmed that I had RP but the dx was still challenged until 2'99 when the damage of the trachea and my vestibular system was so blatant that it could not be challenged again.

Now with the external ear and the bridge of my nose flaring it is pretty noticeable.

However this flare is mild compared to what I hear you guys talking about. My ear hurts, but it is not swollen or blistering. Just red and sore. My nose however was extremely painful. It doesn't help that I have to use a bi-pap to breath and the facial mask sets on the bridge of my nose. And as you can guess that really hurts.

What I am having problems with is adjusting to the higher dosage of pred. It has my sugars out of balance and I am doing some really wild swings. Oh ya, this flare is also attacking my thyroid again. So when it is all over they will have to readjust the medications all over again.

Thank you for the well wishes. I'm really doing ok. Just not as much energy at the moment. Higher levels of pred. work just backwards with me. It tends to make me very sleepy. Guess I need the rest.

Hope you have a wonderful day.

Hope this helps.

R.

The Support Report

http://groups.yahoo.com/group/TheSupportReport

My first symptom of RP was an external nose flare across the bridge, next it was the external area of the left ear, not the lobe though. Have often wondered why it never has gotten my right ear. Then I got vasculitis. Now I am having some left eye problems. I have a question to ask you. How did your doctor's dx you in 1987 when you hadn't yet had the ear or nose flare. I'm just curious about this. You must have had one of the other symptoms that I've not yet experienced.

[Guest guest]

--- drutledge SkyfireRanch@...> wrote:

> Marilyn,

> RP external ear involved dose not affect the ear

> lobe. The lobe dose not contain cartilage.

> As for how I was dxed without external ear or nose

> involvement it took a lot. The standard for a dx of

> RP includes having 3 of the 6 problems listed in the

> McAdam's and collegues' diagnosis algorithm.

> Which is general accepted.

> * bilateral ( or just one side) auricular chondritis

> * nonerosive serongative inflammatory arthritis

> * nasal chronditis

> * respitory chodritis

> * audiovestibular damage

> and histologic confirmation

>

> Out of these I had the respitory chodritis, which

> includes broncitis, laryngitis, pharnygitis and

> hoarsness. All of which I am extermely proned to.

>

> Nasal chondritis included non allergic rhinitis,

> sinusitis and congestion. Also a major problem.

>

> Almost all forms of ocular inflammation are

> included. I have scleritis.

>

> Audiovestibular -this is a very broad range of

> problems, Mine is deafness in the left ear, losing

> the right. Vertigo and balance problems. Nausea,

> vomiting, headaches.

>

> And I have the arthritis portion also.

>

> All of the above problems I have had since about the

> age of 12. But the respitory problems started there

> course very early.

> There are more problems that RP brings then the six

> catagories. But those are the ones that the dx is

> usually made off of. Because I did not have the

> external ear and nose inflammation some doctors

> ignored the dx and just treated the symptoms. This

> caused the destruction of my left hearing nerve

> bundle and the destruction of the lumen in my

> trachea. In '97 it was reconfirmed that I had RP but

> the dx was still challenged until 2'99 when the

> damage of the trachea and my vestibular system was

> so blatant that it could not be challenged again.

> Now with the external ear and the bridge of my nose

> flaring it is pretty noticeable.

> However this flare is mild compared to what I hear

> you guys talking about. My ear hurts, but it is not

> swollen or blistering. Just red and sore. My nose

> however was extremely painful. It doesn't help that

> I have to use a bi-pap to breath and the facial mask

> sets on the bridge of my nose. And as you can guess

> that really hurts.

> What I am having problems with is adjusting to the

> higher dosage of pred. It has my sugars out of

> balance and I am doing some really wild swings. Oh

> ya, this flare is also attacking my thyroid again.

> So when it is all over they will have to readjust

> the medications all over again.

>

> Thank you for the well wishes. I'm really doing ok.

> Just not as much energy at the moment. Higher levels

> of pred. work just backwards with me. It tends to

> make me very sleepy. Guess I need the rest.

>

> Hope you have a wonderful day.

>

> Hope this helps.

> R.

>

> The Support Report

> http://groups.yahoo.com/group/TheSupportReport

>

>

>

>

>

> My first symptom of RP was an external nose flare

> across the bridge,

> next it was the external area of the left ear, not

> the lobe though.

> Have often wondered why it never has gotten my right

> ear. Then I got

> vasculitis. Now I am having some left eye problems.

> I have a

> question to ask you. How did your doctor's dx you

> in 1987 when you

> hadn't yet had the ear or nose flare. I'm just

> curious about this.

> You must have had one of the other symptoms that

> I've not yet

> experienced.

,

Both times when my ears swelled, burned and hurt like

hell, my ear lobes also swelled. I don't know if the

infection in the rest of my ear caused the swelling,

but the lobe looked as if it were going to burst. The

whelp on the front of my ear and the back side of my

ear on my scalp was tremendous. I could not stand for

my hair (not to mention water) to touch my face, ear,

or head. This always last two days along with the

chills and flu symptoms. Now that I am on pred (5 mg)

daily and know I am flaring in different areas of my

body by the symptoms are not as bad and I have been

able to continue to work.

I appreciate you and your knowledge so much. You have

been a wonderful help to me. By the way Dr.

McLain in Birmingham, AL is just wonderful. Thanks

for the recommendation.

Rita in Montgomery

>

>

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