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Whoa , you get um girl!!!! I totally agree with you. These damn doctors know nothing. I think their so used to dealing with minor things they don't see the forest from the trees. I had that for years. I used to scream at them that their was something wrong and they ragged at me for smoking....One time I was so sick and the doctor walked into the room and the first thing out of his mouth was "quit smoking yet." Needless to say I never went back there....We need to educate ourselves so we can educate them....Sue (Curley)

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In a message dated 8/1/01 8:58:34 AM Pacific Daylight Time, mokie@...

writes:

<< Do you think if I went to Sandys Dr. he could point me in the right

direction? I would appreciate any advice at this point. Thanks Again, Ann >>

Ann, Sounds to me like you really need a new set of drs. I would trust

Sandy's opinion 100%. Yes, a rheumy is the dr you need or at least one of

them.. I have a rheumy, PCP, ENT, cardiologist, opthomologist, podiatrist,

some have pulmonologist. Just depends on what your needs are... I go yearly

to my ENT, opthomologist just to have things checked out... The rheumy can

head you in the right direction...

You will want to make sure that you have everything under control and it

saves on a lot of stress. Take some RP information with you to the dr. I

know it is hard to find one who is willing to read it and just doesn't lay it

down or hand it back... I have found for me that when they do that I find

another dr. It's not an easy job, but sooner or later you will have a great

team... Ones that will work with you and stop things before they start.

Good luck to you.... Please keep asking all the questions you need to...

It's hard on the spouses and family. It took a long time for my husband to

come to grips with RP, but now is very supportive.

hugs

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Hello , And I thank you for your input on the Doctor. I'm having a time with my husband. He is one of those self healers and can't come to grips with this.My doctor called yesterday and said the blood work he did on me came back negative except my thyroid level was low, which is no big thing to me I have had hypothyroidism for 26 years. I asked what about the relapsing polychondritis and his reply was "what about it?" Sandy emailed me a name of a rheumatologist.( I hope thats spelled some where right). I was just wondering if I need a rheumatologist or an Endocrinologist or a ear nose & throat specialist. I was at a ear nose and throat earlier this year and he said nothing was wrong. I guess I had another quack.Anyways at this point I don't know which way to turn. Do you think if I went to Sandys Dr. he could point me in the right direction? I would appreciate any advice at this point. Thanks Again, Ann

Ann

Hello Ann,

My name is Woods and I would like to welcome you to our group and also to tell you to tell that quack of a doctor to take a flying leap.

This is exactly what our foundation is working to correct. Ignorant doctors who don't know their butts from a hole in the wall.

I'm sorry Ann, but this person is a T total stupid quack and don't you dare go back and see him.

How many people have to die before these doctors do a little research and realize that RP is NOT a little disease that is going to go away.

Ann, I'm so glad you found this group. You need good info and help finding a good knowledgeable doctor. You've come to the right place.

Welcome!!!!!!

W

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

Hello my name is Ann. I am 52 years old and a mother of 3, one daughter and two sons, the grandmother of 2 beautiful girls ages 8 & 4, 2 adorable grandsons ages 1 & 3.And of course the wife of 1 husband his name is Stan. I have just recently been diagnosed with RP. And am really confused. My doctor said there wasn't any thing to worry about it will go away,

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

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Hi Ann,

Start with the Rheumatologist. I also have a ENT., Pulmonologist and

PCP all at the Cleveland Clinic. It works out great because if they have a question they call each other while I'm in the office.

Hugs,

Sandy

Hello , And I thank you for your input on the Doctor. I'm having a time with my husband. He is one of those self healers and can't come to grips with this.My doctor called yesterday and said the blood work he did on me came back negative except my thyroid level was low, which is no big thing to me I have had hypothyroidism for 26 years. I asked what about the relapsing polychondritis and his reply was "what about it?" Sandy emailed me a name of a rheumatologist.( I hope thats spelled some where right). I was just wondering if I need a rheumatologist or an Endocrinologist or a ear nose & throat specialist. I was at a ear nose and throat earlier this year and he said nothing was wrong. I guess I had another quack.Anyways at this point I don't know which way to turn. Do you think if I went to Sandys Dr. he could point me in the right direction? I would appreciate any advice at this point. Thanks Again, Ann

Ann

Hello Ann,

My name is Woods and I would like to welcome you to our group and also to tell you to tell that quack of a doctor to take a flying leap.

This is exactly what our foundation is working to correct. Ignorant doctors who don't know their butts from a hole in the wall.

I'm sorry Ann, but this person is a T total stupid quack and don't you dare go back and see him.

How many people have to die before these doctors do a little research and realize that RP is NOT a little disease that is going to go away.

Ann, I'm so glad you found this group. You need good info and help finding a good knowledgeable doctor. You've come to the right place.

Welcome!!!!!!

W

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

Hello my name is Ann. I am 52 years old and a mother of 3, one daughter and two sons, the grandmother of 2 beautiful girls ages 8 & 4, 2 adorable grandsons ages 1 & 3.And of course the wife of 1 husband his name is Stan. I have just recently been diagnosed with RP. And am really confused. My doctor said there wasn't any thing to worry about it will go away,

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

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Hi Ann,

Sounds like you have a PCP like I have. It would seem reasonable to

start with a rheumatologist. Will your insurance let you find the

one you want or does your PCP have to refer you? Hang in there.

Hope you are doing OK. Love, Marilyn

Hello , And I thank you for your input on the Doctor. I'm

having a time with my husband. He is one of those self healers and

can't come to grips with this.My doctor called yesterday and said the

blood work he did on me came back negative except my thyroid level

was low, which is no big thing to me I have had hypothyroidism for 26

years. I asked what about the relapsing polychondritis and his reply

was " what about it? " Sandy emailed me a name of a rheumatologist.( I

hope thats spelled some where right). I was just wondering if I need

a rheumatologist or an Endocrinologist or a ear nose & throat

specialist. I was at a ear nose and throat earlier this year and he

said nothing was wrong. I guess I had another quack.Anyways at this

point I don't know which way to turn. Do you think if I went to

Sandys Dr. he could point me in the right direction? I would

appreciate any advice at this point. Thanks Again, Ann

> Ann

>

>

> Hello Ann,

> My name is Woods and I would like to welcome you to our

group and also to tell you to tell that quack of a doctor to take a

flying leap.

> This is exactly what our foundation is working to correct.

Ignorant doctors who don't know their butts from a hole in the wall.

> I'm sorry Ann, but this person is a T total stupid quack and

don't you dare go back and see him.

> How many people have to die before these doctors do a little

research and realize that RP is NOT a little disease that is going to

go away.

> Ann, I'm so glad you found this group. You need good info

and help finding a good knowledgeable doctor. You've come to the

right place.

> Welcome!!!!!!

> W

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

> Hello my name is Ann. I am 52 years old and a mother of 3,

one

> daughter and two sons, the grandmother of 2 beautiful girls ages

8 &

> 4, 2 adorable grandsons ages 1&3.And of course the wife of 1

husband

> his name is Stan. I have just recently been diagnosed with RP.

And am

> really confused. My doctor said there wasn't any thing to worry

about

> it will go away,

>

>

>

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Thanks ever so much Sandy, I can't tell you how much I appreciate this group. Ann

Ann

Hello Ann,

My name is Woods and I would like to welcome you to our group and also to tell you to tell that quack of a doctor to take a flying leap.

This is exactly what our foundation is working to correct. Ignorant doctors who don't know their butts from a hole in the wall.

I'm sorry Ann, but this person is a T total stupid quack and don't you dare go back and see him.

How many people have to die before these doctors do a little research and realize that RP is NOT a little disease that is going to go away.

Ann, I'm so glad you found this group. You need good info and help finding a good knowledgeable doctor. You've come to the right place.

Welcome!!!!!!

W

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

Hello my name is Ann. I am 52 years old and a mother of 3, one daughter and two sons, the grandmother of 2 beautiful girls ages 8 & 4, 2 adorable grandsons ages 1 & 3.And of course the wife of 1 husband his name is Stan. I have just recently been diagnosed with RP. And am really confused. My doctor said there wasn't any thing to worry about it will go away,

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

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Ann,

If you are interested here are the list of my Doctors.

Rheumotologist- Dr MacIntyre -Cleveland Clinic Westlake

PCP- Dr. Bohn- C.C. Westlake

Ent- Dr Eliachar- C.C. Downtown Cleveland

Pulmonologist- Dr Arroliga- C.C. Downtown

Dr. MacIntyre and Dr. Bohn are excellent.

I heard Dr. Eliachar is closing his practice so I will be looking for a new ENT.

Dr. Arroliga is very knowledgable concerning RP.

I also see Dr at C.C. Downtown, he is my Opthamologist.

Hugs,

Sandy

<< Do you think if I went to Sandys Dr. he could point me in the right direction? 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

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Sandy, Thanks ever so much for the list of Doctors. I'm going to make an appointment with Dr. Hoffman first thing in the morning. You did say he was knowledgable with RP. My husband said to make the appointment with yours but thats a little to far. We live in Geauga Co. about 3 miles east of the Ashtabula Co. line.(The great snow belt.) I wish there was one in the Willoughby Clinic,that's alot closer.But if he's a good Dr. its worth the drive. Thanks again Ann

Re: Ann

Ann,

If you are interested here are the list of my Doctors.

Rheumotologist- Dr MacIntyre -Cleveland Clinic Westlake

PCP- Dr. Bohn- C.C. Westlake

Ent- Dr Eliachar- C.C. Downtown Cleveland

Pulmonologist- Dr Arroliga- C.C. Downtown

Dr. MacIntyre and Dr. Bohn are excellent.

I heard Dr. Eliachar is closing his practice so I will be looking for a new ENT.

Dr. Arroliga is very knowledgable concerning RP.

I also see Dr at C.C. Downtown, he is my Opthamologist.

Hugs,

Sandy

<< Do you think if I went to Sandys Dr. he could point me in the right direction? 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

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Ann,

Listen to Sandy. She has a lot of problems with RP and if she recommends a doctor to you, you can rest assured that he/she is a good one.

I'd trust Sandy with my life.

I would personally start with a Rheumy. RP is an autoimmune disease and Rheumy's specialize in autoimmune problems and discuss the other specialists with him/her.

I personally have a husband wife set of doctors. The husband is my ENT and the wife is my Rheumy. It works great for me. I even found out from the Rheumy that my ENT leaves his underwear lying around the floor and won't pick it up. LMAO!!!!!!!!!

I think we are all firm believers in healing thy self, but I really think thy self needs help to accomplish this and until you can get the RP under control, the body doesn't have a pray.

Ask any questions that you have Ann. So glad to see you jump right in and not lurking.

W

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

Hello , And I thank you for your input on the Doctor. I'm having a time with my husband. He is one of those self healers and can't come to grips with this.My doctor called yesterday and said the blood work he did on me came back negative except my thyroid level was low, which is no big thing to me I have had hypothyroidism for 26 years. I asked what about the relapsing polychondritis and his reply was "what about it?" Sandy emailed me a name of a rheumatologist.( I hope thats spelled some where right). I was just wondering if I need a rheumatologist or an Endocrinologist or a ear nose & throat specialist. I was at a ear nose and throat earlier this year and he said nothing was wrong. I guess I had another quack.Anyways at this point I don't know which way to turn. Do you think if I went to Sandys Dr. he could point me in the right direction? I would appreciate any advice at this point. Thanks Again, Ann

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Ann,

You're Welcome. One of our members, B., sees Dr. Hoffman.

I think she is in the process of moving right now and I don't know if she is online. I don't know if Dr. Hoffman has as much experience with

RP. as Dr. MacIntyre does . I would make the appointment with Dr. Hoffman and see if you like him. Let me know how it goes. If you need to talk, my telephone # is .

Maybe one day soon we can get together.

Hugs,

Sandy

Sandy, Thanks ever so much for the list of Doctors. I'm going to make an appointment with Dr. Hoffman first thing in the morning. You did say he was knowledgable with RP. My husband said to make the appointment with yours but thats a little to far. We live in Geauga Co. about 3 miles east of the Ashtabula Co. line.(The great snow belt.) I wish there was one in the Willoughby Clinic,that's alot closer.But if he's a good Dr. its worth the drive. Thanks again Ann

Re: Ann

Ann,

If you are interested here are the list of my Doctors.

Rheumotologist- Dr MacIntyre -Cleveland Clinic Westlake

PCP- Dr. Bohn- C.C. Westlake

Ent- Dr Eliachar- C.C. Downtown Cleveland

Pulmonologist- Dr Arroliga- C.C. Downtown

Dr. MacIntyre and Dr. Bohn are excellent.

I heard Dr. Eliachar is closing his practice so I will be looking for a new ENT.

Dr. Arroliga is very knowledgable concerning RP.

I also see Dr at C.C. Downtown, he is my Opthamologist.

Hugs,

Sandy

<< Do you think if I went to Sandys Dr. he could point me in the right direction? 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

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