Re: Great News from my Dr. and for all with RP.

[Guest guest]

In a message dated 1/26/02 5:46:05 PM Pacific Standard Time, jen@...

writes:

<< . I'd be more than happy to help out on a

clinical study for anyone looking for a cure for this cRaP (couldn't resist

using someone else's phrase - it's SO appropriate) >>

Thanks , I'll put your name down. Don't know yet if he will need us,

but I'll tell him we have a group of over 200 people with RP and that should

help him out. LOL Yes, I love cRaP..... thanks to whoever wrote it first.

hugs

[Guest guest]

In a message dated 1/26/02 5:56:22 PM Pacific Standard Time,

katdavis@... writes:

<< I'd like to volunteer to help in anyway I can as I'd like to be part of any

studies or trials. >>

Thanks , I'm keeping a list so if he ever does want names, I can give

them to him...Boy the more research the better. Lets get these docs moving.

Love to have you come to the west coast so I could meet you. And everyone

else who wants to come. Boy, I hope he needs your bodies here. LOL

hugs

[Guest guest]

In a message dated 1/26/02 6:28:34 PM Pacific Standard Time,

sherry_24230_2000@... writes:

<< She is starting with some of

the same systoms Mom had , so I hope she will go .

Love Sherry >>

Sherry, if Shirley won't go to the Dr, you just tell us and we will send out

the posses. She can't wait too long. Can she see your mom's dr.? He was so

wonderful. Is the Omega diet the fruit and veggie diet? You know me, I

can't remember past this morning. LOl

It is so good to hear from you. I hope you are doing well. I think of you

and Shirley all the time. You tell Shirley, that if by chance it is RP, the

sooner she is dx the better off she will be and probably the less treatment

she will need. We just want to kick the ol' RP out before it starts.

Let me know what the Omega diet is. I probably don't know much about it but

maybe someone else does. If it's the one that's on the net saying his wife

was cured of RP using this diet, I think that one was a hoax.

Take care and keep me updated on your onery sister.

hugs

[Guest guest]

claudia,

EXCELLENTES NOUVELLES DE VOUS ET POUR TOUS.

AMITIES

MAREI PIA

[Guest guest]

Hi - sorry to hear you've got a cold but so glad to hear the GOOD NEWS! That is really encouraging. I'd be more than happy to help out on a clinical study for anyone looking for a cure for this cRaP (couldn't resist using someone else's phrase - it's SO appropriate). Take care of yourself and get rid of that cold.

ginal Message-----From: RCColloran@... Sent: Saturday, January 26, 2002 4:23 PMTo: Rpolychondritis Subject: Great News from my Dr. and for all with RP.

Hi everyone. I am so far behind on reading my mail. I have a rotten cold and sore throat and just haven't been on line since I came back from Stanford. I hope to catch up by tomorrow. Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy or other specialist) and an attending Rheumy. Thursday my attending was a Dr that was going to go to work with Dr. Buckner but decided he liked sunny Calif. better. LOL He said her center was a work of art and that he was doing research at Stanford and basically working under her. (He isn't getting funded from her, but doing research under her guidelines) I told him the Dr B is working with our Foundation and asked if he would like to too. (Also told him maybe we could help fund his research as the Foundation grows). He said yes to all and gave me his e mail addy and told me to contact him about it when I talked to the board. He told me their latest research that they are working on. Said it was really " HOT" . It is helping to find the cause of RP, started with an 'M'. Dummy me was so excited I forgot to write it down. I will email him and ask for a detailed letter on his research and will send it to the Foundation Board. He really thinks there is hope of finding out more about RP real soon. Well, I just had to share that good news to you all. This does give us a little hope. We need more drs like him and really interested on the research end. When he left the fellow stated that after seeing me and hearing about RP, she too wants to go into the research end too. (They do both there, just like Dr. B.....research and seeing patients). I will also ask if he needs any of us for any trials he is conducting and let you all know what he says. I think most of us are willing to give a little blood or answer a few questions to help find a cure. This is WHY we need everyone's support in the Foundation. We can help to fund any research that is going to find a CURE!!! We are ALL looking for the same thing. I hope to get all the email answered soon.. You all take care and those that are sick now you are in my thoughts. hugsOh BTW.....everything went fine at the visit. LOL He did run a lot of blood tests, Anti ENA, Anti DNA, RF, Aldolase, CK total and Cyroglobulins (for this they had to use heated blood tubes, never had that done before.) And my bone density test came back fine. So it was a good visit. 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]

--- RCColloran@... wrote:

> In a message dated 1/26/02 5:56:22 PM Pacific

> Standard Time,

> katdavis@... writes:

>

> << I'd like to volunteer to help in anyway I can as

> I'd like to be part of any

> studies or trials. >>

> Thanks , I'm keeping a list so if he ever

> does want names, I can give

> them to him...Boy the more research the better.

> Lets get these docs moving.

>

> Love to have you come to the west coast so I could

> meet you. And everyone

> else who wants to come. Boy, I hope he needs your

> bodies here. LOL

>

> hugs

>

>

, That is great news ! I was wondering if you

had heard anything about an omega diet that is to have

something to do with RP ? Shirley wanted to know she

has an appointment with a doctor sometime next month ,

if we can get her to go . She is starting with some of

the same systoms Mom had , so I hope she will go .

Love Sherry

__________________________________________________

[Guest guest]

, Shirley will be seeing the same doctor Mom

had . I do believe she is scared to go , but we all

are staying on top her . I told her I didn't want to

lose another if we can help it . Between Mom and my

brother it's really taken it toll . I was as close to

him as I am my hubsand , he was here every day to see

if I neede anything or if I needed to go anywhere .

But I am hanging in there and still going to school. I

will ask Shirley tomarrow about that diet Mom's doctor

told her something about it I am not sure . Talk to

you later . Love , Sherry

--- RCColloran@... wrote:

> In a message dated 1/26/02 6:28:34 PM Pacific

> Standard Time,

> sherry_24230_2000@... writes:

>

> << She is starting with some of

> the same systoms Mom had , so I hope she will go .

> Love Sherry >>

> Sherry, if Shirley won't go to the Dr, you just tell

> us and we will send out

> the posses. She can't wait too long. Can she see

> your mom's dr.? He was so

> wonderful. Is the Omega diet the fruit and veggie

> diet? You know me, I

> can't remember past this morning. LOl

>

> It is so good to hear from you. I hope you are

> doing well. I think of you

> and Shirley all the time. You tell Shirley, that if

> by chance it is RP, the

> sooner she is dx the better off she will be and

> probably the less treatment

> she will need. We just want to kick the ol' RP out

> before it starts.

>

> Let me know what the Omega diet is. I probably

> don't know much about it but

> maybe someone else does. If it's the one that's on

> the net saying his wife

> was cured of RP using this diet, I think that one

> was a hoax.

>

> Take care and keep me updated on your onery sister.

>

> hugs

>

>

__________________________________________________

[Guest guest]

CLAUDIA,

Glad your back, sorry about the cold, but thrilled with the news you shared.

I'd like to volunteer to help in anyway I can as I'd like to be part of any

studies or trials. I wouldn't mind a little vacation trip to the West

Coast. Please keep us all informed. Again, thanks.

Great News from my Dr. and for all with RP.

> Hi everyone. I am so far behind on reading my mail. I have a rotten cold

> and sore throat and just haven't been on line since I came back from

> Stanford. I hope to catch up by tomorrow.

>

> Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy

or

> other specialist) and an attending Rheumy.

>

> Thursday my attending was a Dr that was going to go to work with Dr.

Buckner

> but decided he liked sunny Calif. better. LOL He said her center was a

work

> of art and that he was doing research at Stanford and basically working

under

> her. (He isn't getting funded from her, but doing research under her

> guidelines) I told him the Dr B is working with our Foundation and asked

if

> he would like to too. (Also told him maybe we could help fund his

research

> as the Foundation grows). He said yes to all and gave me his e mail addy

and

> told me to contact him about it when I talked to the board. He told me

their

> latest research that they are working on. Said it was really " HOT " . It

is

> helping to find the cause of RP, started with an 'M'. Dummy me was so

> excited I forgot to write it down. I will email him and ask for a

detailed

> letter on his research and will send it to the Foundation Board. He

really

> thinks there is hope of finding out more about RP real soon.

>

> Well, I just had to share that good news to you all. This does give us a

> little hope. We need more drs like him and really interested on the

research

> end. When he left the fellow stated that after seeing me and hearing

about

> RP, she too wants to go into the research end too. (They do both there,

just

> like Dr. B.....research and seeing patients). I will also ask if he needs

> any of us for any trials he is conducting and let you all know what he

says.

> I think most of us are willing to give a little blood or answer a few

> questions to help find a cure.

>

> This is WHY we need everyone's support in the Foundation. We can help to

> fund any research that is going to find a CURE!!! We are ALL looking for

the

> same thing.

>

> I hope to get all the email answered soon.. You all take care and those

that

> are sick now you are in my thoughts.

>

> hugs

>

>

> Oh BTW.....everything went fine at the visit. LOL He did run a lot of

blood

> tests, Anti ENA, Anti DNA, RF, Aldolase, CK total and Cyroglobulins (for

this

> they had to use heated blood tubes, never had that done before.) And my

bone

> density test came back fine. So it was a good visit.

>

>

> 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]

Sherry

Sorry to hear that Shirley might have RP. I will keep her in my thoughts and prayers. Good to see a post from you. I was wondering how you were doing. Give Shirley a hug for me and tell her to go in and get the news one way or the other. It is best if she finds out early then they can treat it. The sooner the better!

Lots of love

Glenda

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hurrah!! Way to go !!!

Great News from my Dr. and for all with RP.

Hi everyone. I am so far behind on reading my mail. I have a rotten cold and sore throat and just haven't been on line since I came back from Stanford. I hope to catch up by tomorrow. Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy or other specialist) and an attending Rheumy. Thursday my attending was a Dr that was going to go to work with Dr. Buckner but decided he liked sunny Calif. better. LOL He said her center was a work of art and that he was doing research at Stanford and basically working under her. (He isn't getting funded from her, but doing research under her guidelines) I told him the Dr B is working with our Foundation and asked if he would like to too. (Also told him maybe we could help fund his research as the Foundation grows). He said yes to all and gave me his e mail addy and told me to contact him about it when I talked to the board. He told me their latest research that they are working on. Said it was really " HOT" . It is helping to find the cause of RP, started with an 'M'. Dummy me was so excited I forgot to write it down. I will email him and ask for a detailed letter on his research and will send it to the Foundation Board. He really thinks there is hope of finding out more about RP real soon. Well, I just had to share that good news to you all. This does give us a little hope. We need more drs like him and really interested on the research end. When he left the fellow stated that after seeing me and hearing about RP, she too wants to go into the research end too. (They do both there, just like Dr. B.....research and seeing patients). I will also ask if he needs any of us for any trials he is conducting and let you all know what he says. I think most of us are willing to give a little blood or answer a few questions to help find a cure. This is WHY we need everyone's support in the Foundation. We can help to fund any research that is going to find a CURE!!! We are ALL looking for the same thing. I hope to get all the email answered soon.. You all take care and those that are sick now you are in my thoughts. hugsOh BTW.....everything went fine at the visit. LOL He did run a lot of blood tests, Anti ENA, Anti DNA, RF, Aldolase, CK total and Cyroglobulins (for this they had to use heated blood tubes, never had that done before.) And my bone density test came back fine. So it was a good visit. 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]

lets hope that someone does keep this up and even though I am not in the foundation right now due to various reasons, would love to help out in anyway possible. Barbara aka bj RE: Great News from my Dr. and for all with RP. Hi - sorry to hear you've got a cold but so glad to hear the GOOD NEWS! That is really encouraging. I'd be more than happy to help out on a clinical study for anyone looking for a cure for this cRaP (couldn't resist using someone else's phrase - it's SO appropriate). Take care of yourself and get rid of that cold. ginal Message-----From: RCColloran@... Sent: Saturday, January 26, 2002 4:23 PMTo: Rpolychondritis Subject: Great News from my Dr. and for all with RP. Hi everyone. I am so far behind on reading my mail. I have a rotten cold and sore throat and just haven't been on line since I came back from Stanford. I hope to catch up by tomorrow. Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy or other specialist) and an attending Rheumy. Thursday my attending was a Dr that was going to go to work with Dr. Buckner but decided he liked sunny Calif. better. LOL He said her center was a work of art and that he was doing research at Stanford and basically working under her. (He isn't getting funded from her, but doing research under her guidelines) I told him the Dr B is working with our Foundation and asked if he would like to too. (Also told him maybe we could help fund his research as the Foundation grows). He said yes to all and gave me his e mail addy and told me to contact him about it when I talked to the board. He told me their latest research that they are working on. Said it was really " HOT" . It is helping to find the cause of RP, started with an 'M'. Dummy me was so excited I forgot to write it down. I will email him and ask for a detailed letter on his research and will send it to the Foundation Board. He really thinks there is hope of finding out more about RP real soon. Well, I just had to share that good news to you all. This does give us a little hope. We need more drs like him and really interested on the research end. When he left the fellow stated that after seeing me and hearing about RP, she too wants to go into the research end too. (They do both there, just like Dr. B.....research and seeing patients). I will also ask if he needs any of us for any trials he is conducting and let you all know what he says. I think most of us are willing to give a little blood or answer a few questions to help find a cure. This is WHY we need everyone's support in the Foundation. We can help to fund any research that is going to find a CURE!!! We are ALL looking for the same thing. I hope to get all the email answered soon.. You all take care and those that are sick now you are in my thoughts. hugsOh BTW.....everything went fine at the visit. LOL He did run a lot of blood tests, Anti ENA, Anti DNA, RF, Aldolase, CK total and Cyroglobulins (for this they had to use heated blood tubes, never had that done before.) And my bone density test came back fine. So it was a good visit. 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]

WOW !

You did good! This is wonderful, I'm so glad your seeing a great doctor who wants to research and is interested in you as a patient. I wish I could say the same thing for mine. He was as bad as always. I am going to give my blood work from this time to come back and then I am calling for my records. Its time I move on and find a great doctor also.

Sorry, about the sore throat and cold. I hope your feeling better soon! So glad your trip went well. Take care,

Love ya

LU

Hi everyone. I am so far behind on reading my mail. I have a rotten cold and sore throat and just haven't been on line since I came back from Stanford. I hope to catch up by tomorrow.

Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy or other specialist) and an attending Rheumy.

Thursday my attending was a Dr that was going to go to work with Dr. Buckner but decided he liked sunny Calif. better. LOL He said her center was a work of art and that he was doing research at Stanford and basically working under her. (He isn't getting funded from her, but doing research under her guidelines) I told him the Dr B is working with our Foundation and asked if

[Guest guest]

I'd like to volunteer to help in anyway

I also would like to volunteer , I would be glad to.

Lu