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Sunshine, I know how disappointing drs can be at times. I think we have all

been there. They seem to make us feel worse sometimes. I know you don't

want RP, none of us do, but what we want is to know WHAT we have and get a

name put to it.

I don't know why drs. still can't get it through their heads that we don't

have to have a red ear and our sed rates can be normal.!!! That makes me so

mad.

I hate to keep bringing it up, but I'm going to see if the heart dr can write

something to the fact that my aortic valve has been having damage done to it

since before 1995 and I had NO symptoms of RP. He told me the damage was all

from RP and not the normal damage he usually sees. I hope his story is the

same when I see him on Monday.

Please know we are all with you in spirit. Wish we could all be there in

person with you. LOL Boy would we make the drs. nervous. LOL

Keep your chin up and know there are plenty of us here for you. AND like I

said, you will always be part of the RP family no matter what.

hugs and more hugs

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Here i am getting frustrated...has any of you every been frustrated with

doctors?@#?!? Dr. Michet says my symptoms are atypical of RP...no ear

flares, blood work normal, 6 months a long time for a flare. ENT says

my larnyx looks normal and agrees with rheumy, maybe i am having

muscle spasm/inflamation around throat area. Next step a PH monitor

to wear thru my nose down to the spincter muscle at the end of my

esophogus ( a mere 24 hours!). I am to eat and act normally (yea,

right). This is to measure how well my meds are working (if) for acid

reflux (GERD). You all know, of course, i don't want RP, so this is good

news, but sure don't want o get out of here with " nothing' " and no

treatment as a diagnosis.

Sunshine not feeling very sunny

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--- sunshinemirage wrote:

> Here i am getting frustrated...has any of you every

> been frustrated with

> doctors?@#?!? Dr. Michet says my symptoms are

> atypical of RP...no ear

> flares, blood work normal, 6 months a long time for

> a flare. ENT says

> my larnyx looks normal and agrees with rheumy, maybe

> i am having

> muscle spasm/inflamation around throat area. Next

> step a PH monitor

> to wear thru my nose down to the spincter muscle at

> the end of my

> esophogus ( a mere 24 hours!). I am to eat and act

> normally (yea,

> right). This is to measure how well my meds are

> working (if) for acid

> reflux (GERD). You all know, of course, i don't

> want RP, so this is good

> news, but sure don't want o get out of here with

> " nothing' " and no

> treatment as a diagnosis.

> Sunshine not feeling very sunny

> Dear Sunshine,

> I think we can all relate to that frustration!! But

at least they are not just kissing you off and

treating you like a hyochondriac - they are looking

for answers. The thing through your nose does NOT

sound pleasant, lets hope it will give som answers.

Love Liz

__________________________________________________

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--y'all make me laugh ;0 great meds!!!! I came back to say i was

feeling better...can't keep me down too long, just ask my husband and

daughter how i DRIVE them! I have thought of some more questions

and answers during my short-lived depression, and yes Liz and

at least we are on the right quest....but it would be grand if y'all could

be here!!!!!wouldn't it be great to make the docs a little nervous for a

change?

seems like you are getting better and better with each day...you

go girl! Thoughts and prayer with y'all,

Sunshine

P.S. this tube down my esophagus? well let's just say i've done more

fun things! Eat, drink and be merry ;)

In Rpolychondritis@y..., RCColloran@a... wrote:

> Sunshine, I know how disappointing drs can be at times. I think we

have all

> been there. They seem to make us feel worse sometimes. I know

you don't

> want RP, none of us do, but what we want is to know WHAT we have

and get a

> name put to it.

>

> I don't know why drs. still can't get it through their heads that we

don't

> have to have a red ear and our sed rates can be normal.!!! That

makes me so

> mad.

>

> I hate to keep bringing it up, but I'm going to see if the heart dr can

write

> something to the fact that my aortic valve has been having damage

done to it

> since before 1995 and I had NO symptoms of RP. He told me the

damage was all

> from RP and not the normal damage he usually sees. I hope his story

is the

> same when I see him on Monday.

>

> Please know we are all with you in spirit. Wish we could all be there

in

> person with you. LOL Boy would we make the drs. nervous. LOL

>

> Keep your chin up and know there are plenty of us here for you. AND

like I

> said, you will always be part of the RP family no matter what.

>

> hugs and more hugs

>

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