Re: Help! RP or not RP?

[Guest guest]

Sue, You poor thing, how frustrated you must be. I was dx with

costochondritis 25 years ago. I have always had sinus pain (no cold or

infection) hoarsness which has gotten worse (especially before pred and while

lowering pred) and inner ear pain. My eyes were sometimes red and swollen

but no allergies. These symptoms along with others went on for years. I had

numerous tests for autoimmune diseases and all came back neg or boarderline.

I believe I've had Rp for longer than the first ear flare, hey, but what do I

know.lol I hope you get to a doctor right away and find a answer that can

put your mind at rest one way or the other. Don't you just want to

SCREAM!!!!!! Well, go ahead and do it, it will make you feel better. Just

remember that you are in my thoughts and prayers and that I'm always here for

you. Please take care and let us know what happens.

Love and big hugs

C

[Guest guest]

Sue, here. Send a copy of Trentham's article to your HMO. I believe

they are doing this because they don't want to pay -- at least that makes

sense to me. Also, since it is so rare, most of their docs probably don't

know anything about it and don't want to admit it!!

I started with several bouts of sinusitis, laryngitis, bronchitis; inner ear

swelling and pain; eyes swelling, red and burning, low fever; shortness of

breath, dizziness -- unable to go up stairs without having to stop several

times; arteritis/vasculits, the discs in my TMJ are virtually gone; joint

swelling and pain; have had degenerative disc disease for over 12 years (I'm

38), rib swelling and pain -- so bad that at times, if I lay on my side, it

almost feels as if the other side is over lapping, and a couple have

separated (bone from cartilage) and have had one snap, among other things;

arthralgia, etc. I could go on, but I think you have the idea.

The cartilage that supports my vocal cords is shot now -- I've been told that

even if cured of RP, I would not get my voice back! I have not had my voice

since before Christmas last year and that was only for a few days (my husband

and kids enjoy the fact I can't yell LOL).

I know it is tiring, frustrating and depressing, but hang in there and fight!

And don't let them make you think you're going crazy

either. Hope my ramblings help in some way...........

Love and Blessings,

: )

[Guest guest]

Hi Sue

My syptoms started with joint pain which they atributed to Fybromyalgia.

Then inner ear swelling where my ear drum was bulging and I have heard

properly since. Then I had scelritis (eye inflamation and redness.) My

outer ear and nose did swell but was the last thing to happen. I have heard

that some people don't have ear and nose involvement. Your outer ear

turning red could have been a minor ear flare. Since I had my first ear

flare my outer ear turns so red people have commented on it.

I also have sinus pain, inner ear pain, dizziness, rib/chest pain, larygeal

inflammation, hoarseness, throat constriction, shortness of breath. I also

get dark spots in my vision and talked to the doctor by he didn't think it

was part of the RP, just maybe eye strain. Does any one else out there get

this?

I know it can be so frustrating to not have a diagnosis. My last doctor

told me I was just over weight and stressed out. I spent three years with

unbearable pain in my joints and he would only say take over the counter

ibuprophen. He wouldn't prescrib anything for the pain. I have a different

doctor now. Sorry to hear your HMO is being difficult. I don't know much

about them as I live in Canada. I wish you all the best try to keep your

spirits up and remember you are the best authority on you body because you

live it in. Keep after them. Hope this is of some help. Take Care

Elaine

----------

>

> To: Rpolychondritisegroups

> Subject: Help! RP or not RP?

> Date: June 8, 2000 5:50 AM

>

> Hi everybody, I'm Sue from Boston and have been a member of the group

since

> April when I was diagnosed with RP. I was also the one having trouble

getting a

> referral from my HMO to someone who sees RP patients. But here's my

problem: do

> I really have RP?

>

> I was diagnosed by Trentham in April, who many of you know, who sees a

lot of RP

> patients. But my HMO/PCP refuses to accept the diagnosis. I've been in a

flare

> of " whatever " since March, up and down now 3 times. I've had " whatever "

for 20

> years, with a 12 year remission and increasing to chronic status of late.

> Trentham gave me a NSAID and colchicine which helped the symptoms but

didn't

> stop the flares. When I told Trentham that my HMO refused to believe the

> diagnosis, even he seems to be more cautious about it. So's here the

symptoms

> of " whatever " :

>

> sinus pain

> inner ear pain with vertigo, dizziness

> rib/chest pain (this is definitely costachondritis)

> larygeal inflammation, hoarseness, throat constriction, gagging

> shortness of breath

> arthalgia of migratory type

> sinus pain

> inner ear pain with vertigo, dizziness

> rib/chest pain (this is definitely costachondritis)

> larygeal inflammation, hoarseness, throat constriction, gagging

> shortness of breath

, low fever, fatigue

>

> sometimes: my eyeballs feel swollen and get very bloodshot

> sometimes: nerve pain, intention tremors, dark spots in vision

> once or twice: my outer ear turned red

>

> So the problem with my diagnosis is that the outer ear/nose thing is

mostly

> absent but I certainly have the long list of RP symptoms. At my

diagnosis and

> during this last flare no test has been done on me except ANCA, which was

> negative. I've been tested 8 and 20 years ago and was negative for DNA

> antibodies and for rheumatoid factor. I'm very tired of feeling bad and

want

> some resolution. Some of the symptoms are scary, like the vision,

tremors and

> breathing difficulty. My HMO wants me to see their rheumy but the first

> appointment in in mid August! I filed an appeal for a referral to

Trentham and

> found out yesterday that I was awarded a referral for six visits.

>

> I would be interested to know how many of you have flares not involving

the

> outer ear or nose or have any other advice for me. Any of you that

started your

> symptoms more with the sinuses, ribs, throat or arthalgia? Thanks, SUE

>

>

> ------------------------------------------------------------------------

> Old school buds here:

> http://click./1/4057/1/_/32049/_/960468486/

> ------------------------------------------------------------------------

>

> hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

HI Sue,

My husband Sam has the Sam problem with DR diagnosing

his ear flare has come and gone twice. He also has the pain in chests what

we thought was sleep apnea enlarged uvula that makes him feel as if he is

choking. He was diagnosed with Lymes disease five years ago, now the Drs. say

he probably never had it. Still they can only clinically diagnose him. It is

very frustrating, he isn't on any meds and from what I have seen he should

be. the HMO's are a big pain, and we have run into a lot of delays because

of them. Hang in there.

in Conn.

[Guest guest]

Yes, , I considered the medic alert bracelet,

but as you say there is not enoufh room. I make do

with a typewritten paper and hope someone looks in my

bag! LOL As to the beach it does look lovely but I

have a crop of mosquito bites !! I know, it serves me

right! Love Liz

RCColloran@... wrote:

> Liz, I agree that all of us should carry something

> that explains RP. We

> should also have medic alert bracelets (mine doesn't

> have enough room to

> write everything)LOL

> This things could one day save our lives. It was

> hard for me to admit that

> these things have to be done.

>

> Well, Liz, I wish you a bright, breezy weekend by

> the beach in those

> beautiful waters. Wish I was there to walk the

> beach with you. ((One of my

> favorite things to do). Have a great weekend and

> enjoy yourself.

>

> Love

> C

>

__________________________________________________

[Guest guest]

Hi Sue,

I know there are a few people on here that have had flares without any

involvement with ears or nose. I read somewhere that to be dx with RP you

have to have 3 out of .............5 or 6 symptoms, I think this is correct,

but don't quote me. Anyway, when I was dx, I had the ear flare only. My

point is you don't have to have 2 or 3 symptoms to have RP and there really

isn't any protocol from determining RP. We have learned this much from this

group.

Keep us updated on what happens about this and I wish you all the luck in

the world. I truly hope you don't have RP, but if you do, then fight like

hell to get the treatment you need.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Hi everybody, I'm Sue from Boston and have been a member of the group since

April when I was diagnosed with RP. I was also the one having trouble

getting a

referral from my HMO to someone who sees RP patients. But here's my problem:

do

I really have RP?

I was diagnosed by Trentham in April, who many of you know, who sees a lot

of RP

patients. But my HMO/PCP refuses to accept the diagnosis. I've been in a

flare

of " whatever " since March, up and down now 3 times. I've had " whatever " for

20

years, with a 12 year remission and increasing to chronic status of late.

Trentham gave me a NSAID and colchicine which helped the symptoms but didn't

stop the flares. When I told Trentham that my HMO refused to believe the

diagnosis, even he seems to be more cautious about it. So's here the

symptoms

of " whatever " :

sinus pain

inner ear pain with vertigo, dizziness

rib/chest pain (this is definitely costachondritis)

larygeal inflammation, hoarseness, throat constriction, gagging

shortness of breath

arthalgia of migratory type

flushing of face, low fever, fatigue

sometimes: my eyeballs feel swollen and get very bloodshot

sometimes: nerve pain, intention tremors, dark spots in vision

once or twice: my outer ear turned red

So the problem with my diagnosis is that the outer ear/nose thing is mostly

absent but I certainly have the long list of RP symptoms. At my diagnosis

and

during this last flare no test has been done on me except ANCA, which was

negative. I've been tested 8 and 20 years ago and was negative for DNA

antibodies and for rheumatoid factor. I'm very tired of feeling bad and

want

some resolution. Some of the symptoms are scary, like the vision, tremors

and

breathing difficulty. My HMO wants me to see their rheumy but the first

appointment in in mid August! I filed an appeal for a referral to Trentham

and

found out yesterday that I was awarded a referral for six visits.

I would be interested to know how many of you have flares not involving the

outer ear or nose or have any other advice for me. Any of you that started

your

symptoms more with the sinuses, ribs, throat or arthalgia? Thanks, SUE

[Guest guest]

In a message dated 06/08/2000 8:49:21 AM Eastern Daylight Time,

lovett@... writes:

<< I would be interested to know how many of you have flares not involving the

outer ear or nose or have any other advice for me. Any of you that started

your

symptoms more with the sinuses, ribs, throat or arthalgia? Thanks, SUE

>>

Sue I know this is late and I am sorry for that. I haven't been online much

of late due to a major flare myself. not being a doctor your symptoms sound

like RP to me. and I am glad you filed an appeal to see Trentham. and won!!!

My HMO is a real pain in the butt and I have to fight for any new med my

doctors want to put me on to try. But you have to keep up the fight if

denied. Have you seen an opthamologist for your eyes?/ VERY IMPORTANT!!!!!!!

if not please make that appointment as soon as possible for an evaluation.

once vision is lost due to episcleritis or one of the other eye damaging

conditions we can get it may not always return. so please go to the eye

doctors

love, hugs and hope

Angie