Re: Digest Number 1912

[Guest guest]

" How were you diagnosed? Did any of you require

a biopsy to attain the

diagnosis?

How long do your flares last? Mine seem to last

anywhere from 2 hours

to a week. "

Ramius,

I put up with the swelling, itching, and warm

ears for about 6 months before I saw my PCP. (Up

until then, I would hold ice to my ears, which

relieved the pain.) Suspecting an autoimmune

disease he sent me to a dermatologist. This

dermatologist was about to retire, totally

ignored the note my PCP wrote of his suspisions

and said I might be allergic to metals (non-gold)

jewelry. He said to wear only gold and come back

next month. An internist finally gave the DX and

I can't remember whether I was put on prednisone

by the time I got a biopsy done. The biopsy was

inconclusive and the pathologist wrote " ulcer " on

his report which the derm. was trying to remove

from my charts (I should check to see if that was

done).

You know, now that I come to think of it, someone

who worked at a reputable ear piercing place in

SF actually DX me first, but I didn't take her

seriously. My ears were red and swollen and I'd

come to get my piercing looked at because it

wasn't healing right or was taking a long time to

heal.

I don't get flares, at least not the kind that

you all talk about. It's just one long happy run

that (some) goes away once I take medication. I

don't have the pain in my ears (is it because

there's no cartilage left to attack???), though

it can be warm at times and the pain in may chest

is gone. My main problem is breathing.

I see two Rheums. One is a female dr who is

accessible, even though she might not have all

the answers. I feel comfortable with her. The

other one is someone i just started seeing and

saw him first for a second opinion. He is a prof

of med and he's presented my case twice to a

conference of rheums, with me as physical

display. When I first met with him, he told me

that to get a DX of RP, you need to meet 3 out of

6 symptoms:

1) inflammation of ears

2) ocular inflammation

3) inflammatory arthritis

4) nasal inflammation

5) Tracheal disease

6) inner ear involvement

So, Ramius, it sounds like your rheum is being

too careful, but instead of waiting for an

official DX (since it may take some time for the

other symptoms to appear) at least get treated

for each symptom as they come. You don't want to

wait and cause more damage. You could lose your

hearing. same thing with eye involvement.

BTW, can anyone tell me what signs to look out

for if there's eye involvement?

=====

When choosing the lesser of two evils,

I always like the one I haven't tried.

-- Mae West

__________________________________________________

[Guest guest]

>

>

> BTW, can anyone tell me what signs to look out

> for if there's eye involvement?

Hi ,

I usally get an itching in my eye for about 2 days before I get

a flare. It almost feels at if there is an eyelash in there that I

can't get out. It starts innocently enough, I get this line of red,

just like someone got a crayon and drew it across my eye. Then the eye

gets dry, and you can actually feel when you eye changes direction. As

in, if you are looking left, and move just your eye to look right, I

can feel it moving across the eyeball. It only takes me about 1 day to

get to a bad eye flare (the whole white of the eye goes red on me). If

you get this, go straight to the doctor! The first time it took the

doctor 4 months to get me on anything that would help. He didn't want

to give me Pred cause of all the side effects. I was taking Percocet

for the pain, and it didn't help the pain at all. I think out of the

nose, ears and eyes, for me the eye was the worse pain. I just

couldn't think it hurt so bad, and your eye becomes really sensitive

to light or movement. I had to have the house very dark, and my hubby

wears glasses, and his vision isn't that great, poor dear. I also got

very bad migraine headaches with this as well, and spent about 20

hours out of the day in bed asleep.

I hope I haven't scared you! The second time I found this lady doc,

and the one good thing was that she put me on Pred (50mg) and in 1 day

the pain was less for me. But it took about 6 wks on that dosage to

clear my eye. She said I had 3 nodules growing in the back of the eye,

and they were pressing on the nerve, that is why it was so painful for

me.

hope your week is going well, and that you are feeling good

le