need information for patient advocate

[Guest guest]

Margaret, so sorry to hear about your run around... Seems like we have all

been there. Do you have a copy of Dr. Trenthams article? I do have some

fibro sites, I will look through them and see what I can send you..

Please know that my thoughts are with you.... If you need anything else,

please just let us know....someone is always here for you.

hugs

[Guest guest]

Margaret, so sorry to hear about your run around... Seems like we have all

been there. Do you have a copy of Dr. Trenthams article? I do have some

fibro sites, I will look through them and see what I can send you..

Please know that my thoughts are with you.... If you need anything else,

please just let us know....someone is always here for you.

hugs

[Guest guest]

Hi, I am doing a little better right now, except for the fact that I am

getting the run around...I called the patient advocate and she wants a

statement from me along with information about my condition...Does anyone

know of any websites that have articles about RP and fibromyalgia that

would be reputable enough to give to these people?

I also just talked with my rheumy because my PCM doesn't want to have to

deal with me--nothing related to the RP...so if I go in with pain in my

ear and it turns out to be something related to RP they will not treat

it, and they will not refer me to any other specialists, but said the

rheumy had to...bad thing is that he can't because my insurance company

said " NO " ...in addition, I asked him about going to an opthamologist

because I had had problems with my eyes in the past, being very painful

and feeling like they were going to talk--but he said it didn't sound

like an RP concern. In addition, he said that my breathing problems

didn't have anything to do with RP, but rather altitude and obesity. I

want another rheumy, however, everyone here is booked until January!

Does anyone have any suggestions? HELP

Margaret

[Guest guest]

Hi, I am doing a little better right now, except for the fact that I am

getting the run around...I called the patient advocate and she wants a

statement from me along with information about my condition...Does anyone

know of any websites that have articles about RP and fibromyalgia that

would be reputable enough to give to these people?

I also just talked with my rheumy because my PCM doesn't want to have to

deal with me--nothing related to the RP...so if I go in with pain in my

ear and it turns out to be something related to RP they will not treat

it, and they will not refer me to any other specialists, but said the

rheumy had to...bad thing is that he can't because my insurance company

said " NO " ...in addition, I asked him about going to an opthamologist

because I had had problems with my eyes in the past, being very painful

and feeling like they were going to talk--but he said it didn't sound

like an RP concern. In addition, he said that my breathing problems

didn't have anything to do with RP, but rather altitude and obesity. I

want another rheumy, however, everyone here is booked until January!

Does anyone have any suggestions? HELP

Margaret

[Guest guest]

Margaret,

Go into Yahoo, go down to health and click on diseases. When that takes you

into the medical section, type in relapsing polychondritis. Either the 2nd

or 3rd article is by Dr. Trentham. Print this out and take it with you. It

is about 13 pages long, but worth taking the time to print and take with

you. I can't help you with the Fibromyalgia but it is the RP that you need

the expert medical help with. Not that the Fibro isn't important, but any

Dr. can pick up a book and read about that or ask another MD how to treat it

if they are not sure. Yes, you need an eye appt. also. RP can greatly

affect your eye sight as well. Give the patient care advocate a chance to

help you. If he or she is unable to, then the next step is to call and make

an appt. with the hospital commander. Because you are dealing with the

military, it is very important that you follow the chain of command and keep

your cool when dealing with the various departments. This will earn you

much more respect and in the end it will get you what you need. For the

time being, I would keep an extra copy of that article by Dr. Trenthem with

you at all times in case you should need to go to the ER or be seen by an MD

that is unfamiliar with your case and RP. It might save you a lot of

headaches. Also, continue educating yourself--even in small ways, everyday

about RP. This will help you become your best advocate.

Kathi

>

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: need information for patient advocate

>Date: Mon, 24 Sep 2001 18:32:55 -0600

>

>Hi, I am doing a little better right now, except for the fact that I am

>getting the run around...I called the patient advocate and she wants a

>statement from me along with information about my condition...Does anyone

>know of any websites that have articles about RP and fibromyalgia that

>would be reputable enough to give to these people?

>

>I also just talked with my rheumy because my PCM doesn't want to have to

>deal with me--nothing related to the RP...so if I go in with pain in my

>ear and it turns out to be something related to RP they will not treat

>it, and they will not refer me to any other specialists, but said the

>rheumy had to...bad thing is that he can't because my insurance company

>said " NO " ...in addition, I asked him about going to an opthamologist

>because I had had problems with my eyes in the past, being very painful

>and feeling like they were going to talk--but he said it didn't sound

>like an RP concern. In addition, he said that my breathing problems

>didn't have anything to do with RP, but rather altitude and obesity. I

>want another rheumy, however, everyone here is booked until January!

>Does anyone have any suggestions? HELP

>

>Margaret

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Margaret,

Go into Yahoo, go down to health and click on diseases. When that takes you

into the medical section, type in relapsing polychondritis. Either the 2nd

or 3rd article is by Dr. Trentham. Print this out and take it with you. It

is about 13 pages long, but worth taking the time to print and take with

you. I can't help you with the Fibromyalgia but it is the RP that you need

the expert medical help with. Not that the Fibro isn't important, but any

Dr. can pick up a book and read about that or ask another MD how to treat it

if they are not sure. Yes, you need an eye appt. also. RP can greatly

affect your eye sight as well. Give the patient care advocate a chance to

help you. If he or she is unable to, then the next step is to call and make

an appt. with the hospital commander. Because you are dealing with the

military, it is very important that you follow the chain of command and keep

your cool when dealing with the various departments. This will earn you

much more respect and in the end it will get you what you need. For the

time being, I would keep an extra copy of that article by Dr. Trenthem with

you at all times in case you should need to go to the ER or be seen by an MD

that is unfamiliar with your case and RP. It might save you a lot of

headaches. Also, continue educating yourself--even in small ways, everyday

about RP. This will help you become your best advocate.

Kathi

>

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: need information for patient advocate

>Date: Mon, 24 Sep 2001 18:32:55 -0600

>

>Hi, I am doing a little better right now, except for the fact that I am

>getting the run around...I called the patient advocate and she wants a

>statement from me along with information about my condition...Does anyone

>know of any websites that have articles about RP and fibromyalgia that

>would be reputable enough to give to these people?

>

>I also just talked with my rheumy because my PCM doesn't want to have to

>deal with me--nothing related to the RP...so if I go in with pain in my

>ear and it turns out to be something related to RP they will not treat

>it, and they will not refer me to any other specialists, but said the

>rheumy had to...bad thing is that he can't because my insurance company

>said " NO " ...in addition, I asked him about going to an opthamologist

>because I had had problems with my eyes in the past, being very painful

>and feeling like they were going to talk--but he said it didn't sound

>like an RP concern. In addition, he said that my breathing problems

>didn't have anything to do with RP, but rather altitude and obesity. I

>want another rheumy, however, everyone here is booked until January!

>Does anyone have any suggestions? HELP

>

>Margaret

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Dear Margaret, yesterday I received information in the mail from Nord, National Organization of Rare Disorders which outlines our diseases. It is informative and you could take that to your doctors or whoever. You can email them at: orphan@.... or http://www.rarediseases.org. If you need their address its: P.O. Box 8923 New Fairfield CT 06812-8923.

I got infomation on RP and Fibromyalgia....

Sure wish you the best and please remember we are here to help. Best Wishes....Sue

[Guest guest]

Dear Margaret, yesterday I received information in the mail from Nord, National Organization of Rare Disorders which outlines our diseases. It is informative and you could take that to your doctors or whoever. You can email them at: orphan@.... or http://www.rarediseases.org. If you need their address its: P.O. Box 8923 New Fairfield CT 06812-8923.

I got infomation on RP and Fibromyalgia....

Sure wish you the best and please remember we are here to help. Best Wishes....Sue