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I guess I have been fortunate in that I have had doctors who run evaluations of their practices & seek to be better at what they do. I have researched doctors before I go to them & then I go in with the attitude of "do you want to be a partner in managing my health, or should I go elsewhere?" I have been very fortunate to have found docs that I can "partner" with. If they don't have that attitude, then we are not a good fit.

Also, having a doc in the family & a good friend who is also one, I know that it is not an exact science and there are so many areas of expertise in medicine. Knowing some docs personally has also helped me realize they are people just like us & many of them actually are in medicine to help others. Sometimes they are put off if I come in educated on a topic and assertive about it, but I try to be polite, professional & forward-thinking to solve the medical issue at hand. If I'm positive, they tend to be as well.

It is frustrating when one hasn't had the care they should & I'm sorry you haven't, Debbie, but these are some things that have helped me to get the care that I want & deserve & I hope it helps someone. Cindi

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Yes, it's EXTREMELY frustrating at how many people in this group have NOT received good medical care, through no fault of their own. There are so many restrictions on health care now, between which doctors the insurance companies 'allow' you to see, or in the case of those in countries w/ socialized medicine, in being able to see a doctor w/ ANY experience or with less than a 6-month waiting period.

That's why I'm so glad this forum exists now -- it wasn't there when I needed it, but it's there now to help others in my position. To have someone come to the group scared/confused and see them learn about this disease, learn about the treatments that are available to them, learn about the docs that ARE experienced and compassionate, and feel the support and acceptance that this group has to offer, it just brings a smile to my face to know that some good can come out of the bad that some of us have gone through. It makes it more 'worth it' for those of us who had a hard time of it to see others spared b/c of what we are able to share. This is a pretty awesome group of people, and it's one I'm proud to be a member of!Deb

Re: Docs on A forum I guess I have been fortunate in that I have had doctors who run evaluations of their practices & seek to be better at what they do. I have researched doctors before I go to them & then I go in with the attitude of "do you want to be a partner in managing my health, or should I go elsewhere?" I have been very fortunate to have found docs that I can "partner" with. If they don't have that attitude, then we are not a good fit. Also, having a doc in the family & a good friend who is also one, I know that it is not an exact science and there are so many areas of expertise in medicine. Knowing some docs personally has also helped me realize they are people just like us & many of them actually are in medicine to help others. Sometimes they are put off if I come in educated on a topic and assertive about it, but I try to be polite, professional & forward-thinking to solve the medical issue at hand. If I'm positive, they tend to be as well. It is frustrating when one hasn't had the care they should & I'm sorry you haven't, Debbie, but these are some things that have helped me to get the care that I want & deserve & I hope it helps someone. Cindi

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Kind of makes you “Proud to be an Achalasian” doesn’t

it?

I too love this group and think we are ALL

pretty awesome! We are such a compassionate group of individuals! Sometimes I

feel like it’s the *type* of

individuals that we are, that has something to do with why we have this disease

in the first place. You know what I mean…that sensitive, caring,

thoughtful, easily prone to stress, type. (But then every once in awhile, there’s

got to be that one exception to the rule that totally throws that theory out

the window) LOL

Sandi

Re: Docs on A

forum

Yes,

it's EXTREMELY frustrating at how many people in this group have NOT received

good medical care, through no fault of their own. There are so many

restrictions on health care now, between which doctors the insurance companies

'allow' you to see, or in the case of those in countries w/ socialized

medicine, in being able to see a doctor w/ ANY experience or with less than a

6-month waiting period.

That's

why I'm so glad this forum exists now -- it wasn't there when I needed it, but

it's there now to help others in my position. To have someone come to the

group scared/confused and see them learn about this disease, learn about the

treatments that are available to them, learn about the docs that ARE

experienced and compassionate, and feel the support and acceptance that this

group has to offer, it just brings a smile to my face to know that some good

can come out of the bad that some of us have gone through. It makes it

more 'worth it' for those of us who had a hard time of it to see others spared

b/c of what we are able to share. This is a pretty awesome

group of people, and it's one I'm proud to be a member of!

Deb

Re: Docs on A forum

I guess I have been fortunate in that I have had doctors who run

evaluations of their practices & seek to be better at what they do. I

have researched doctors before I go to them & then I go in with the

attitude of " do you want to be a partner in managing my health, or should

I go elsewhere? " I have been very fortunate to have found docs that

I can " partner " with. If they don't have that attitude, then we

are not a good fit.

Also, having a doc in the family & a good friend who is also one, I know

that it is not an exact science and there are so many areas of expertise in

medicine. Knowing some docs personally has also helped me realize they

are people just like us & many of them actually are in medicine to help

others. Sometimes they are put off if I come in educated on a topic and

assertive about it, but I try to be polite, professional & forward-thinking

to solve the medical issue at hand. If I'm positive, they tend to be as

well.

It is frustrating when one hasn't had the care they should & I'm sorry you

haven't, Debbie, but these are some things that have helped me to get the care

that I want & deserve & I hope it helps someone. Cindi

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Well said, Deb & I must agree!!!!

Cindi

-- Re: Docs on A forum

Yes, it's EXTREMELY frustrating at how many people in this group have NOT received good medical care, through no fault of their own. There are so many restrictions on health care now, between which doctors the insurance companies 'allow' you to see, or in the case of those in countries w/ socialized medicine, in being able to see a doctor w/ ANY experience or with less than a 6-month waiting period.

That's why I'm so glad this forum exists now -- it wasn't there when I needed it, but it's there now to help others in my position. To have someone come to the group scared/confused and see them learn about this disease, learn about the treatments that are available to them, learn about the docs that ARE experienced and compassionate, and feel the support and acceptance that this group has to offer, it just brings a smile to my face to know that some good can come out of the bad that some of us have gone through. It makes it more 'worth it' for those of us who had a hard time of it to see others spared b/c of what we are able to share. This is a pretty awesome group of people, and it's one I'm proud to be a member of!Deb

Re: Docs on A forum I guess I have been fortunate in that I have had doctors who run evaluations of their practices & seek to be better at what they do. I have researched doctors before I go to them & then I go in with the attitude of "do you want to be a partner in managing my health, or should I go elsewhere?" I have been very fortunate to have found docs that I can "partner" with. If they don't have that attitude, then we are not a good fit. Also, having a doc in the family & a good friend who is also one, I know that it is not an exact science and there are so many areas of expertise in medicine. Knowing some docs personally has also helped me realize they are people just like us & many of them actually are in medicine to help others. Sometimes they are put off if I come in educated on a topic and assertive about it, but I try to be polite, professional & forward-thinking to solve the medical issue at hand. If I'm positive, they tend to be as well. It is frustrating when one hasn't had the care they should & I'm sorry you haven't, Debbie, but these are some things that have helped me to get the care that I want & deserve & I hope it helps someone. Cindi

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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In a message dated 4/8/2004 4:58:21 PM Eastern Daylight Time, heiser@... writes:

That's why I'm so glad this forum exists now -- it wasn't there when I needed it, but it's there now to help others in my position. To have someone come to the group scared/confused and see them learn about this disease, learn about the treatments that are available to them, learn about the docs that ARE experienced and compassionate, and feel the support and acceptance that this group has to offer, it just brings a smile to my face to know that some good can come out of the bad that some of us have gone through. It makes it more 'worth it' for those of us who had a hard time of it to see others spared b/c of what we are able to share. This is a pretty awesome group of people, and it's one I'm proud to be a member of!Deb

Deb,

I am so very glad that this group does exist, and thankful for the time that members graciously give to answer the same questions from new people!

When I first started having serious dysphasia after two fundo surgeries, I was able to find on a support group for people who have gone through GERD fundo surgery, and have had it both be successful and horrible.

Unfortunately, not too many people post on that message board, it seems dead most of the time. I guess because for the most part, people have the bad reflux, have the fundoplication, and go on to be just fine.

So, when I got no answers from anyone on that forum, providence led me to the Achalasia group.

It is a lively discussion forum, with reassurance for those who suffer and think they are alone with this condition. I guess that's one of the most difficult parts about A is that being rare, it's hard to know what is happening to your health and there are no other people to talk to you about it. I mean, the ability to eat........., so basic to being alive and being sociable. To loose that ability, and to be hungry at the same time........., it seems so unbelievably cruel.

That's why this group is so important.

Thanks to all in this forum who take the time to answer questions and lend comfort.

Jan in Northern KY

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