Doctors don't know?????

[Guest guest]

Sharyn, Kathy needs to be seen before the 4th. If it is RP, the longer

without treatment the more damage is done. I was diagnosed by an ENT. He

knew what it was but didn't know how to treat it. LOL He put me on pred and

sent me off to a Rheumy. Took a few rheumys for me to get the right one.

Most doctors DON " T know what RP is and that is the main purpose of the RP

Foundation. That is why it is so important to send in a donation so we can

get the word out. We already have the Brochures made, and are just waiting

to get them printed. Everyone can bombard their area with them to all the

drs and hospitals.

My old PCP put me on antibiotics the first time I had a flare and treated it

as cellulitus. I had to go daily for injections and took oral meds too. It

did finally go away in 3 weeks. The second time I flared he tried the same

thing. After 1 week I said " NO MORE " !!! I was referred to the ENT.

Please don't let her wait!!

I have written to Dateline, 48 hours, Oprah, Montel. almost everyone I can

think of . I think if we all did it and bombarded them all at once they

might react. We need to be heard.

Keep us posted as to how Kathy is doing. If I can do anything to help, let

me know.

hugs

[Guest guest]

Hi Everyone

My friend Kathy went to her family doctor today about her ear and

she talked to him about RP. I mean you could have knocked me over

when she told me he never heard of RP. What the hell do these

doctors learn in school anyway? She sounded like he thought she was

nuts or makeing up this.

Anyway, she doesn't have an infection in her ear...Duhhhh...but her

outer cartiledge <sp> is really inflamed and hurts like hell. Her

inner ear is the same way. He gave her antibiotics anyway.

She still has an appointment with a Rheumy on the 4th of April.

What are the chances that her ear will have calmed down and then the

doctor won't know what has been going on? I was lucky and the

biopsy did show inflamation in the cartiledge. I told her if she

wanted I would send her my doctor's name and phone number and her

family doctor can call him. Think hearing it from my doctor may

help. How about her going to an ENT doctor and chances he hearing

of RP.

I just don't want her to wait since she's in a lot of pain. She's

tuff like me and will try and tuff it out. Don't want to see her do

that.

I'm ready if anyone wants to try and make up some information

mailings to send out. Just tell me what I need to do and I'll be

happy to do what ever I can.

I know this sounds stupid, but has anyone tried to contact anyone

like Dateline or the major news people to see if more information

about RP can be brought to the public attention.

Perhaps then people like that cold hearted witch at my office would

be a little more educated. The women in my office is somewhat my

boss. Right now I don't like her very much and I think she is one

of the most uneducated ignornate cold witches I've ever come into

contact with. And to think I've been working my fanny off for her

for almost 6 years.

Did cover myself by typing up an FMLA Employee's Health notice

regarding my condition and the possibilities of me getting sick,

missing work and the number of doctor appointments I will have to go

to. She didn't like that one at all. Wanted to know how the

medicaion would affect my work...Duhhhh again..told her it wouldn't

put me into lala land if that's what she was worried about. There

just no way I could fully tell you all she said to me, but if I

didn't need my job I think I would have told her right where to put

it.

Oh well, enough about me. Hope you all have a wonderful

weekend...Don't mean to make some of you sick regarding the weather,

the temps should be up to about 85 here in Florida

Hugs

Sharyn

[Guest guest]

Sharyn,

When my PCP told me that I had Rp. He told me he didn't know how to treat

it because in med school the instructor told them not to worry about it they

would never come across a patient with it. Surprise, Surprise.

I'm sorry to hear your friend might have RP. My thoughts and Prayers are

with you both.

Ann

Doctors don't know?????

Hi Everyone

My friend Kathy went to her family doctor today about her ear and

she talked to him about RP. I mean you could have knocked me over

when she told me he never heard of RP. What the hell do these

doctors learn in school anyway? She sounded like he thought she was

nuts or makeing up this.

Anyway, she doesn't have an infection in her ear...Duhhhh...but her

outer cartiledge <sp> is really inflamed and hurts like hell. Her

inner ear is the same way. He gave her antibiotics anyway.

She still has an appointment with a Rheumy on the 4th of April.

What are the chances that her ear will have calmed down and then the

doctor won't know what has been going on? I was lucky and the

biopsy did show inflamation in the cartiledge. I told her if she

wanted I would send her my doctor's name and phone number and her

family doctor can call him. Think hearing it from my doctor may

help. How about her going to an ENT doctor and chances he hearing

of RP.

I just don't want her to wait since she's in a lot of pain. She's

tuff like me and will try and tuff it out. Don't want to see her do

that.

I'm ready if anyone wants to try and make up some information

mailings to send out. Just tell me what I need to do and I'll be

happy to do what ever I can.

I know this sounds stupid, but has anyone tried to contact anyone

like Dateline or the major news people to see if more information

about RP can be brought to the public attention.

Perhaps then people like that cold hearted witch at my office would

be a little more educated. The women in my office is somewhat my

boss. Right now I don't like her very much and I think she is one

of the most uneducated ignornate cold witches I've ever come into

contact with. And to think I've been working my fanny off for her

for almost 6 years.

Did cover myself by typing up an FMLA Employee's Health notice

regarding my condition and the possibilities of me getting sick,

missing work and the number of doctor appointments I will have to go

to. She didn't like that one at all. Wanted to know how the

medicaion would affect my work...Duhhhh again..told her it wouldn't

put me into lala land if that's what she was worried about. There

just no way I could fully tell you all she said to me, but if I

didn't need my job I think I would have told her right where to put

it.

Oh well, enough about me. Hope you all have a wonderful

weekend...Don't mean to make some of you sick regarding the weather,

the temps should be up to about 85 here in Florida

Hugs

Sharyn

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND

ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sharyn,

Hi! I haven't welcomed you yet. I'm still fairly new here myself, just diagnosed in January, and I feel your frustration. I echo what said. I have had two Specialists tell me they've never heard of RP - one was an Orthopedic surgeon; one who is supposed to know about cartilage?! You will find that more and more, and feel you need to make explanations. My advice is to educate yourself as best as you can, so you can be the source of info for your "world". Many of us have just sent out letters to our friends, colleagues and families to help them understand and help us by sending in donations. I've sent out about 100, and I know some have sent many more than that, to get the word out and help generate the help, financially and emotionally, that we all need to educate, generate more research, and to just plain cope.

I'm glad you've joined in with us , you could not have found a better group of friends you share your life with. I have felt blessed by the warmth and kindness I've been shown by these folks. I know you'll feel their uplifting spirit as I have (just watch out for pointy- toed shoes and fly swatters!!)

Stay in touch and if you or Kathy have any questions, don't hesitate to ask. I haven't even asked all mine yet, we all keep sharing together.

Take care,

Carol G

Most doctors DON"T know what RP is and that is the main purpose of the RP Foundation. That is why it is so important to send in a donation so we can get the word out. We already have the Brochures made, and are just waiting to get them printed. Everyone can bombard their area with them to all the drs and hospitals. We need to be heard. Keep us posted as to how Kathy is doing. If I can do anything to help, let me know.

[Guest guest]

Hi sharyn,

I hope your friend can get to someone soon. The longer

she waits the more damage she will have from her ear.

Sounds like she needs to see a rhuemy really SOON!!!!!

Alot of people I think from this site has tryed to get

ahold of different talk shows but noone has gotten any

feedback from them!!!!!!

Please, have your friend get help right away.... She

probably needs to be on predisone right away as that

seems to be the only thing that helps.

keep us in touch....

Carol

--- sharyn1948 wrote:

> Hi Everyone

>

> My friend Kathy went to her family doctor today

> about her ear and

> she talked to him about RP. I mean you could have

> knocked me over

> when she told me he never heard of RP. What the

> hell do these

> doctors learn in school anyway? She sounded like he

> thought she was

> nuts or makeing up this.

>

> Anyway, she doesn't have an infection in her

> ear...Duhhhh...but her

> outer cartiledge <sp> is really inflamed and hurts

> like hell. Her

> inner ear is the same way. He gave her antibiotics

> anyway.

>

> She still has an appointment with a Rheumy on the

> 4th of April.

> What are the chances that her ear will have calmed

> down and then the

> doctor won't know what has been going on? I was

> lucky and the

> biopsy did show inflamation in the cartiledge. I

> told her if she

> wanted I would send her my doctor's name and phone

> number and her

> family doctor can call him. Think hearing it from

> my doctor may

> help. How about her going to an ENT doctor and

> chances he hearing

> of RP.

>

> I just don't want her to wait since she's in a lot

> of pain. She's

> tuff like me and will try and tuff it out. Don't

> want to see her do

> that.

>

> I'm ready if anyone wants to try and make up some

> information

> mailings to send out. Just tell me what I need to

> do and I'll be

> happy to do what ever I can.

>

> I know this sounds stupid, but has anyone tried to

> contact anyone

> like Dateline or the major news people to see if

> more information

> about RP can be brought to the public attention.

>

> Perhaps then people like that cold hearted witch at

> my office would

> be a little more educated. The women in my office

> is somewhat my

> boss. Right now I don't like her very much and I

> think she is one

> of the most uneducated ignornate cold witches I've

> ever come into

> contact with. And to think I've been working my

> fanny off for her

> for almost 6 years.

>

> Did cover myself by typing up an FMLA Employee's

> Health notice

> regarding my condition and the possibilities of me

> getting sick,

> missing work and the number of doctor appointments I

> will have to go

> to. She didn't like that one at all. Wanted to

> know how the

> medicaion would affect my work...Duhhhh again..told

> her it wouldn't

> put me into lala land if that's what she was worried

> about. There

> just no way I could fully tell you all she said to

> me, but if I

> didn't need my job I think I would have told her

> right where to put

> it.

>

> Oh well, enough about me. Hope you all have a

> wonderful

> weekend...Don't mean to make some of you sick

> regarding the weather,

> the temps should be up to about 85 here in Florida

>

>

> Hugs

>

> Sharyn

>

>

__________________________________________________

[Guest guest]

In a message dated 3/9/02 3:48:23 AM Pacific Standard Time,

mgiordano@... writes:

<< I know you'll feel their uplifting spirit as I have (just watch out for

pointy- toed shoes and fly swatters!!)

>>

Carol, I guess that no one has told you about Heidi's pain reliever!!!!

OUCH!! LOL

Watch out for that one.

hugs

[Guest guest]

I know this sounds stupid, but has anyone tried to contact anyone

like Dateline or the major news people to see if more information

about RP can be brought to the public attention.

I wrote Barbara Walters, no response. lol I have written Oprah, and got a letter that they might use it for a future show. I think everyone could try writing, the more letters they get on RP the more they may look into it.

Lu