Hello and thank you for being there

[Guest guest]

Ann,

Hi and Welcome to the group. I am sorry about your DX of RPC. Please note their is no known cure for it but with today's new Meds it can be controlled. I was very ill with the disorder for three years and nothing was working until I got pulsed with 1000 mg of Steroids for three day straight a total of 3000 mg and that gave be back a quality of life and a remission as of OCT of 2000. Their are many people here that can point you in the right direction as far as finding a quality DR if need be. Have you read DR Trentams RP article? if not that would be a good place to start if you need more stuff to read just ask but rule of thumb don't read anything about RP that was published prior to 1996 that all is mostly out dated, we do really have a good fighting chance now. If I can help any more just ask. I wish you well and hang in there.

P

[Guest guest]

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, but I have been reading everything I can find on RP

and what I have read it isn't something that will just go away. Of

course I have been to a dozen doctors, with different complaints for

the last 3 years or more. I guess it first started with vertigo that

lasted for months. I kept telling them my ear hurt something awfull.

they couldn't find anything so then they started telling me I was

depressed. It got to the point I was afraid to go to the doctors for

anything. Last month my ear was hurting so bad I had to go. We

recently changed insurance plans so this was a new doctor to me. He

took one look at my ear and told me I had RP and to go home and look

it up on the internet. Which I did then made app. to talk to him

about it. Thats when he tells me its nothing to worry about. Well I

am worried.What I can find is very vague, so I am really in the dark

about what to expect or how to proceed with this. Apparently my

doctor knows very little about RP. Any suggestions?

Ann

[Guest guest]

Hi Ann,

Welcome to the RP list. First thing you need to do is find yourself a good Rheumatologist that has experience with RP. Rp does not go away so it needs to be treated. Where do you live? maybe someone on the list can reccomend a good Doc.

Hugs,

Sandy

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, but I have been reading everything I can find on RP and what I have read it isn't something that will just go away. Of course I have been to a dozen doctors, with different complaints for the last 3 years or more. I guess it first started with vertigo that lasted for months. I kept telling them my ear hurt something awfull. they couldn't find anything so then they started telling me I was depressed. It got to the point I was afraid to go to the doctors for anything. Last month my ear was hurting so bad I had to go. We recently changed insurance plans so this was a new doctor to me. He took one look at my ear and told me I had RP and to go home and look it up on the internet. Which I did then made app. to talk to him about it. Thats when he tells me its nothing to worry about. Well I am worried.What I can find is very vague, so I am really in the dark about what to expect or how to proceed with this. Apparently my doctor knows very little about RP. Any suggestions? Ann 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]

--- Ann McClintock mokie@...> wrote:

> 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, but I have been reading everything

> I can find on RP

> and what I have read it isn't something that will

> just go away. Of

> course I have been to a dozen doctors, with

> different complaints for

> the last 3 years or more. I guess it first started

> with vertigo that

> lasted for months. I kept telling them my ear hurt

> something awfull.

> they couldn't find anything so then they started

> telling me I was

> depressed. It got to the point I was afraid to go to

> the doctors for

> anything. Last month my ear was hurting so bad I had

> to go. We

> recently changed insurance plans so this was a new

> doctor to me. He

> took one look at my ear and told me I had RP and to

> go home and look

> it up on the internet. Which I did then made app. to

> talk to him

> about it. Thats when he tells me its nothing to

> worry about. Well I

> am worried.What I can find is very vague, so I am

> really in the dark

> about what to expect or how to proceed with this.

> Apparently my

> doctor knows very little about RP. Any suggestions?

>

> Ann

>

>

Hi Ann,

My name is Sharon and I am still new to this group, so

still learning a lot. This is the place to do that.

I go to a wonderful rheumatologist who has one other

RP patient besides myself. My primary care physician

has never seen another patient with RP. He admitted

that he knew little about it and agreed to read

materials that I bring in to him and to educate

himself.

I can really only echo what all the other posts are

saying. This disease can be controlled, but not

cured. What works for one, as far as medication, may

not work for the next. Side effects from medications

used to treat RP vary greatly from one person to the

next.

Hang in there and keep posting and reading.

I live in western Oregon, married, with 5 kids, one

still at home, and four (soon to be 5) grandchildren.

I just got my dx in May, but have had symptoms for

about 5 years.

Take care! Sharon

=====

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