Hi, I'm new here

[Guest guest]

Hi, my nic-name is Sunshine. I have not been " positively " diagnosed

with RP and I am awaiting an appointment at the Mayo Clinic. The

only information I have about RP I have learned on the Internet and

from listening to your Group over the last week...

I have several different opinions from several different

doctors...none of them agree except my ENT and my family

doctor...they say RP, but without much explanation, just a name...it

has been about 1 1/2 years since my ENT first diagnosed RP along with

GERD. BUT, I have learned from your group that one of the diagnoses,

inflamed carotid artery, could be related (diagnosed some 10 years

ago)! The Rheumatologist I went to says " eh " ...don't y'all just

love doctors?

I should also explain that I have another auto-immune disease named

linear/morphia scleroderma.. I am EXTRAORDINARILY lucky with the

scleroderma because (at this point, anyway) it is not systemic, only

affects the left side of my forehead and that my forehead is only

slightly disfigured and easily hidden with bangs. The presence of

one autoimmune disease leads doctors to easily believe I could have

another;)

My symptoms start with the right side of my voice box (or carotid

artery?). I can feel a line of pain that travels from there into my

middle ear. Most recently I was experiencing chest pain and the doc

thought it was the cartilage inflamed around my sternum. My voice

gets hoarse (as it does with GERD) and " tired " ...I can't talk loudly

without squeaking (no offense Squeaky) or more pain. Last week I had

a very tough nite because my throat was so swollen I felt I couldn't

breathe when lying down, so wound up sleeping upright (if you could

call it sleeping). I am presently on a double dose of

Celebrex...200mg twice daily. About a Month ago the doc had me on a

dose pak of Methyl somthingsomthing kind of prednisone...it helped

for about a week. He doesn't want to give it to me again, if he can

help it...not that I want it, either, except to kick this " whatever "

out of here! This episode has been going on for the better part of

this year.

I am afraid the docs at Mayo will find " nothing wrong " ...I am afraid

they will say RP.

Oh, De-Nial runs deep in my family!

Sunshine

[Guest guest]

Hi Sharon! Scleroderma is a hardening of the skin and underlying

tissue. In my case (linear) there is actually a line that runs down

the middle of my forehead...it is very dark and creased...from the

atrophy of the collagen (or they think maybe overproduction). The

morphia part is on the side of my forehead and is also literally skin

and bone...oh, and nerves...boy i don't like to bang my head on that

side! It can also affect the muscles and cause some paralysis. Like

RP it is very rare and as you might see from my answer, little is

known about it...I seem to know more than the docs They say I

would experience redness and swelling whenever it is " growing " , but

that has NEVER been the case and I have had it since i was about 5

years old...uh, that was 45 years ago! And it HAS grown! Hope this

helps some...rheumatologists should know about it. Sunshine

> Hi Sunshine welcome to the group. I need to ask you a question.

The left

> side of my face is kind of disfigured and that is the same side

that my ear

> flares. The doctors said that I have trigeminal neuropathy on top

of RP but

> I think it is RP related. When you said that your forehead is

involved it

> really caught my attention. What is linear/morphia scleroderma? I

got up

> this morning with my left ear flaring and also the side of my

face. Thanks

> and once again welcome to the group.

>

> Love, Sharon

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