RE:Suzanne/Group Advice Needed: )

[Guest guest]

Hi Suzanne!

I've been thinking about you and hoping that you're doing O.K. Have you

had any improvement w/ the itching, etc.? Any doctor's appointments or

ideas as to what's going on? Can they answer you as to why your nose has

grown again? Please let me know what's going on. I am praying that

things will improve for you. I'm sorry that I haven't written sooner. I

have been having a very bad few days.It seems like I'm falling apart all

at once. My facial flushing, pain, and swelling have all gotten worse,

and now my heart seems to be acting up again. ( I was diagnosed w/

symptomatic mitral valve prolapse 3 years ago, but the beta-blocker-

Inderal _ that I was put on got me back on my feet.) My blood pressure

and heart rate are going way low causing me to feel shaky and

light-headed, my face is throbbing and on fire, my nose continues to

grow alarmingly,my feet are turning bright red off ad on when I'm hot,

and my finger tips are gong numb. Other than that I'm in perfect health!

Now, I know I could have it a lot worse, but I'm pretty upset right now

w/ how lousy I feel.( I'll try not to go on and on, but I'm having a

rough night.)

Well, I just seem to go around in circles w/ doctors. I had my appt. w/

the plastic surgeon on Monday.He was VERY nice. My face was flushing

worse than I've ever seen it, and he said he thought I had rosacea.(

This I know unfortunately) Other than that, he said he had no idea

(other than Lupus which I was already tested two or tree times for) what

was happening to my nose. He said he didn't think it was angiofibromas

and that CO2 lasers was not the answer for me. He said open rhinoplasty,

where they open up your nose from the tip. was something to consider

when it grows larger, but he'd leave it alone right now. He said that I

need to go to a university w/ extremely well-read doctors who will

search for what is going on w/ me. He also said that I didn't need a

biopsy to tell Ihat I had rosacea. I asked him to please take a picture

of my face so that I didn't have to keep exposing my face to lights and

pain w/o makeup.( and so a doctor can see how it's growing.) He told me

not to give up.

I decided to go upstairs and make an appt. w/ my cardiologist at this

point. I must have looked pretty bad ( I know I felt light-headed, etc.)

b/c the nurse was REALLY nice to me and told me to sit down. Then, the

other nurse brought me right in . They did an EKG and suffice it to say

was " throwing PVC's " and the Dr. ordered an echo, doubled my Inderal

dosage, and sent me to another rheumatologist for a second opinion.This

is where I start to get upset. The rheumatologist agrees w/ the first

that I have Raynaud's. He said that I definitely have an autoimmune

disease and rosacea and maybe rhinophyma, Then, he disagrees w/ every

other doctor's impression of my blood results and says I have Lupus or

Schleroderma. Swell.

I was a lot more upset before I started to think about the doctors that

we've all been to. At Christmas, one told me I had a brain tumor and was

going to go blind and I'm not. The thing that's really got me is that

they ( derm, card. and rheum.) insist I must have a biopsy of my face

tomorrow, but I don't think I'm game just yet. I'd love to hear any

opinions on this. Did you ever have a biopsy? They say it will leave a

scar ONLY the size of an eraser in the middle of my cheek.( that's if

they don't decide to do a punch biopsy, it doesn't get infected and I

heal well, which I never do) Now, I'm not really vain, but I'm 31 and

don't we all have enough facial problems w/ rosacea? They said it might

be a bad sample and have to be repeated and that nothing may show up at

all. Thay ordered 14 vials worth of blood tests, so I'm thinking we

should get these results BEFORE they biopsy, right? I know the doctor

will be annoyed b/c he wanted it asap, but it's been a year and a half

now of me trying to get help, so what's another week to see the test

results? And BTW, do you understand the medical field at all? How can 6

doctors look at the same test results and 3 say they're fine and 3 say

they're not? The same way you can't find answers about YOUR nose and

health concerns, I guess.. Please forgive me for all this, but what do

you think about the biopsy? Why can't they take skin from a less

prominant area? They all agree it must be the center of cheek, but my

nose is where it's growing. I really don't get it.

I know you hadn't bargained on such a long response to a seemingly

simple question, but I know you know what it's like.

Please write and let me know how you're doing.

Love, Lee

P.S. I'd be grateful for any group thoughts or experiences before I go

in the morning. Thank you and take care!

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Hello again

Have you had any luck in the rhinophyma aspect?

----------

From: ANGELEE214@...[sMTP:ANGELEE214@...]

Sent: 03 June 1999 16:47

To: rosacea-supportegroups

Subject: Help--Drs. Sy & Nase/Group

Hi! This letter is basically a continuation of my requests for

information regarding the treatment / diagnosis of rhinophyma. I have

flesh- colored thickenings (possibly angiofibromas ) on the tip of my

nose that have grown over the last year and a half. The derms will not

advise me as to treatment b/c it is " only possibly rhinophyma " . I'd like

to stop its progression and the leakage of mast cells (if this is indeed

the case ) now and not when it is " definitely rhinophyma " . (at which

point, I think my nose will be much larger and disfigured.) I read that

accutane ( I don't have a lot of pustules/acne at this point, but

already have extremely dry, flaky, red skin on cheeks) and photoderm/Co2

Lasers are possibilities to stop the growth, but I can't decide this on

my own, of course.

I have also read at least 2 posts from group members who believe the

metronidazole itself was a contributing factor in the growth of their

own noses.( Has anyone else had thoughts along these lines? ) I have

been using this topical in its various forms for over 10 years off and

on. Is it possible that metronidazole is the culprit or an aider and

abettor of tissue growth? I'm not taking any chances, so I think I've

decided to go off it until I receive further guidance. This worries me,

however, b/c it may also be fighting the microorganisms. I know this

smacks of the " self-medicating " hoopla, but I have no choice w/o

direction from a derm well versed in the intricacies of rosacea.( I am

not in any way slighting derms, who often are very nice, but not as

knowledgeable in this particular area as one would like. I have one derm

who is excellent. I am going to show him all the literature and posts

I've printed out at my appt. in 3 weeks. I'm hoping that he will delve

deeper into this with me. )

Thank you for listening. I am very grateful for all the support and

guidance that Drs. Nase and Sy, as well as group members, have given. I

have gotten more help and cutting-edge information relating to rosacea

here in the last month, than in 15 years of having this disease. It is

truly a blessing that I found this cite!

Thank you all from the bottom of my heart,

Lee

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