Re: doctors

[Guest guest]

In a message dated 03/01/2000 6:07:23 AM Central Standard Time,

susuw@... writes:

<< There was a psychiatrist with RP that joined us for a while, but I think we

drove her crazy. LOL

>>

roflmao...You would think they were use to crazy....

[Guest guest]

Ding ding, you guys are a special kind of crazy LOL

Re: Doctors

From: Lu1953@...

In a message dated 03/01/2000 6:07:23 AM Central Standard Time,

susuw@... writes:

<< There was a psychiatrist with RP that joined us for a while, but I think we

drove her crazy. LOL

>>

roflmao...You would think they were use to crazy....

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hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Great post !

B.

At 06:36 AM 3/1/2000 -0500, you wrote:

>Mike:

>

>I don't think the many doctors are using our group. I seem to recall at

>one time there was a doctor I think in another country who wrote some

>things, but it has been awhile. Any of the oldies (members in group

>since the start that is LOL) remember who it was or what type of doctor?

>

>Mike, doctors aren't real helpful to alot of us. So many of us have

>been misdiagnosed, told it's in our heads, treated like our pain is not

>really bad etc. Docs don't seem to like to

>believe we know our bodies better than anyone. I think overall they are

>very frustrated and intimidated by this disease because it has so many

>varients and is so tricky to manage.

>I have been to several doctors and only one of them is really

>knowledgeable (other than Dr. Trentham whom I have seen once). He is a

>pulminologist who has really given me valuable info and who I feel will

>be there for me if I get in trouble.

>

>I have had a hard time in the past with doctors feeling I have RP

>because I can flair up quickly and then it calms down with lots of

>Ibuprofen. If I didn't have pictures of my ears flairing up to show the

>docs many of them wouldn't have believed I had it. Said it doesn't come

>and go that fast. Well...... I have so many of the classic symptoms

>that they finally had to agree that I had it and that I am very

>fortunate to have been diagnosed extremely early in the disease and that

>is why I recover very fast. I am 36 and was confirmed diagnosis of RP

>3/99. So far they have not found any damage to my body from the RP.

>Main thing is that you are going to have to educate yourself and your

>wife and not stop asking question and demanding tests, consults etc

>until they listen to you. It can be very frustrating, but this group

>will make all the difference in the world. There are many very smart

>people in this group who have been through so much and can share what

>has and hasn't worked for them or their loved one with RP. Just start a

>file and print off info and take to docs and make them read and enter

>into your file. If doc is intimidated by this, get another one cause

>your going to need docs open to many different ideas for you to find the

>best treatment options out there. For many of us it is trial and error

>because this disease presents in so many different ways.

>

>I work in the medical field and am constantly trying to learn about

>autoimmune and related diseases. I researched Minocine (an antibiotic)

>and it has been helpful in my getting better. It has worked for some

>and then not for others.

>

>I was really sick this time last year and on 80 mg of Pred and really

>down. I am happy to say at this time I am free of pred and doing well.

>Still have aches and pains and lose my voice at times, but am able to

>manage and work fulltime with a 6 year old daughter and

>take care of my home. There is hope out there for your wife. Finding

>the right meds and doctors has given me back quality of life and I plan

>on fighting like hell to stay this way.

>

>This group will help in so many ways to deal with this disease. Tell

>your wife to hang in there and she already has a great ally in you and

>your wanting to help. You can be such a big part in her dealing with

>this and I am so glad you have taken interest and want to help. It

>really can make a huge difference in how she does with this disease.

>

>Sorry to be so long, but keep looking for answers and ask questions.

>This group is great and you and your wife are not out there alone. We

>are all here for you!

>

>Take care,

>

>

>

>

>

>

>Mike Stephani wrote:

>

>>

>>

>> Just for curiousity, does anyone know whether any of our doctors are

>> using this forum to discuss or to find out what each one is doing

>> aboutRP? I see there is a difference in treatment from person to

>> person. As RP is rare, I'd think there would be some dialog between

>> the doctors. If it hadn't have been for the internet our doc wouldn't

>> have found out about RP in time to save my wife's life.

>>

>> -----------------------------------------------------------------------

>>

>> -----------------------------------------------------------------------

>> hi and welcome. maybe we can come up with answers that our doctors

>> can't

>

>

>

>Attachment Converted: " c:\eudora\attach\ReRpo178 "

>

>Attachment Converted: " c:\eudora\attach\CWIND126.gif "

>

[Guest guest]

Mike:

I don't think the many doctors are using our group. I seem to recall at

one time there was a doctor I think in another country who wrote some

things, but it has been awhile. Any of the oldies (members in group

since the start that is LOL) remember who it was or what type of doctor?

Mike, doctors aren't real helpful to alot of us. So many of us have

been misdiagnosed, told it's in our heads, treated like our pain is not

really bad etc. Docs don't seem to like to

believe we know our bodies better than anyone. I think overall they are

very frustrated and intimidated by this disease because it has so many

varients and is so tricky to manage.

I have been to several doctors and only one of them is really

knowledgeable (other than Dr. Trentham whom I have seen once). He is a

pulminologist who has really given me valuable info and who I feel will

be there for me if I get in trouble.

I have had a hard time in the past with doctors feeling I have RP

because I can flair up quickly and then it calms down with lots of

Ibuprofen. If I didn't have pictures of my ears flairing up to show the

docs many of them wouldn't have believed I had it. Said it doesn't come

and go that fast. Well...... I have so many of the classic symptoms

that they finally had to agree that I had it and that I am very

fortunate to have been diagnosed extremely early in the disease and that

is why I recover very fast. I am 36 and was confirmed diagnosis of RP

3/99. So far they have not found any damage to my body from the RP.

Main thing is that you are going to have to educate yourself and your

wife and not stop asking question and demanding tests, consults etc

until they listen to you. It can be very frustrating, but this group

will make all the difference in the world. There are many very smart

people in this group who have been through so much and can share what

has and hasn't worked for them or their loved one with RP. Just start a

file and print off info and take to docs and make them read and enter

into your file. If doc is intimidated by this, get another one cause

your going to need docs open to many different ideas for you to find the

best treatment options out there. For many of us it is trial and error

because this disease presents in so many different ways.

I work in the medical field and am constantly trying to learn about

autoimmune and related diseases. I researched Minocine (an antibiotic)

and it has been helpful in my getting better. It has worked for some

and then not for others.

I was really sick this time last year and on 80 mg of Pred and really

down. I am happy to say at this time I am free of pred and doing well.

Still have aches and pains and lose my voice at times, but am able to

manage and work fulltime with a 6 year old daughter and

take care of my home. There is hope out there for your wife. Finding

the right meds and doctors has given me back quality of life and I plan

on fighting like hell to stay this way.

This group will help in so many ways to deal with this disease. Tell

your wife to hang in there and she already has a great ally in you and

your wanting to help. You can be such a big part in her dealing with

this and I am so glad you have taken interest and want to help. It

really can make a huge difference in how she does with this disease.

Sorry to be so long, but keep looking for answers and ask questions.

This group is great and you and your wife are not out there alone. We

are all here for you!

Take care,

Mike Stephani wrote:

>

>

> Just for curiousity, does anyone know whether any of our doctors are

> using this forum to discuss or to find out what each one is doing

> aboutRP? I see there is a difference in treatment from person to

> person. As RP is rare, I'd think there would be some dialog between

> the doctors. If it hadn't have been for the internet our doc wouldn't

> have found out about RP in time to save my wife's life.

>

> -----------------------------------------------------------------------

>

> -----------------------------------------------------------------------

> hi and welcome. maybe we can come up with answers that our doctors

> can't

[Guest guest]

There was a psychiatrist with RP that joined us for a while, but I think we

drove her crazy. LOL

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

Mike:

I don't think the many doctors are using our group. I seem to recall at one

time there was a doctor I think in another country who wrote some things,

but it has been awhile. Any of the oldies (members in group since the start

that is LOL) remember who it was or what type of doctor?

Take care,

[Guest guest]

> I don't think the many doctors are using our group. I seem to recall

> at one time there was a doctor I think in another country who wrote

> some things, but it has been awhile. Any of the oldies (members in

> group since the start that is LOL) remember who it was or what type of

> doctor?

>

Ciao!

I think he(?) was an Italian doctor, who had a couple of RPers as his

patient.

Arto

[Guest guest]

No I think that one actually had RP too didn't he? Wasn't he saying he was

cured? I can't remember. But he didn't speak English, I do remember that.

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

Ciao!

I think he(?) was an Italian doctor, who had a couple of RPers as his

patient.

Arto

[Guest guest]

In a message dated 02/29/2000 10:27:52 PM Eastern Standard Time,

logger@... writes:

<<

Just for curiousity, does anyone know whether any of our doctors are

using this forum to discuss or to find out what each one is doing

aboutRP? I see there is a difference in treatment from person to

person. As RP is rare, I'd think there would be some dialog between

the doctors. If it hadn't have been for the internet our doc wouldn't

have found out about RP in time to save my wife's life.

>>

I feel the same way All my doctors know about this site and were told to join

in your right all docs treat it differently there is no standard except for

the pred and even that dose is different. They should have a clearing house

to discuss info

[Guest guest]

- Please add Jane Hoyt Buckner,MD--she is a Rheumatologist in

Seattle,Washington..Pete went to see her last year and she is currently doing

reasearch which includes RP..Her e-mail is jbuckner@...

phone is 206 223-8812...Thanks Janet

[Guest guest]

In a message dated 9/2/00 3:18:54 PM Eastern Daylight Time, jang2@...

writes:

<<

I don't think we get upset simply because we are so dependent on the

doctors. For myself, its also the disappointment in the doctor's character.

I had thought he was a caring person, as well as a good clinician. It hurts

to find a lack of caring in someone that I thought better of. I can't help

but feel that if he treats me like this, how is he with new patients that he

hardly knows.

jang

>>

It is a disgrace! Shirley

[Guest guest]

--

On Sat, 2 Sep 2000 14:54:23 shirlf3542

>I know it sounds silly, but it hurt my feelings so bad. I have been this

doctor's patient for over 10 years.

>I have been talked to the same way by doctors and I understand just how you

feel. I think it upsets us so very much because we are in so much need of them

to help us.

I've just had an unpleasant encounter with my primary doctor. He is a man I've

worked with for 10 or 12 years & have seen as his patient for about 4 years. I

went to him with a sudden onset of swollen legs, chest pain, dizziness,

shortness of breath. He sent me for lab work & only communicates by having his

office people relay phone messages to me. Its been almost impossible to get him

to come to the phone himself. I spoke to him when I ran into him at work & told

him exactly how I felt about his using this buffer system so he wouldn't have to

waste his valuable time speaking with his patients himself. I'm not sure where

it will go from there.

I don't think we get upset simply because we are so dependent on the doctors.

For myself, its also the disappointment in the doctor's character. I had

thought he was a caring person, as well as a good clinician. It hurts to find a

lack of caring in someone that I thought better of. I can't help but feel that

if he treats me like this, how is he with new patients that he hardly knows.

jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

[Guest guest]

Jang,

for me it was a major dissapointment in my family doc. I have honestly loved

this man for many years. I felt I could depend on him to help me anytime I

needed it. However, he has seemed to change over the last year. I did send

him an e-mail and told him exactly how I felt. I doubt very seriously I will

go back to him again. I hate to start over with a new family doc, but I'm

not going to go to a doc feeling as I do about him.

[Guest guest]

In a message dated 9/2/00 7:33:22 PM Eastern Daylight Time, loggiekw@...

writes:

<< --------------------------------------->

Jang,

for me it was a major dissapointment in my family doc. I have honestly

loved

this man for many years. I felt I could depend on him to help me anytime I

needed it. However, he has seemed to change over the last year. I did send

him an e-mail and told him exactly how I felt. I doubt very seriously I

will

go back to him again. I hate to start over with a new family doc, but I'm

not going to go to a doc feeling as I do about him.

>>

Good for you. I am so proud of you. I hope I can do the same. Shirley

[Guest guest]

In a message dated 09/02/2000 10:41:11 PM Eastern Daylight Time,

shirlf3542@... writes:

<< he has seemed to change over the last year. I did send

him an e-mail and told him exactly how I felt. >>

,

I'm so glad you had that opportunity - to write your feelings. I usually

have this speech in my head of all the things I'd like to say, but when that

person is in front of me or even on the telephone, I just go blank.

Now, even if nothing changes his/your circumstances, at least you'll have a

better feeling about it.

Helen

[Guest guest]

In a message dated 9/2/00 12:18:54 PM Pacific Daylight Time,

jang2@... writes:

<< I've just had an unpleasant encounter with my primary doctor. I went to

him with a sudden onset of swollen legs, chest pain, dizziness, shortness of

breath. He communicates by having his office people relay phone messages to

me. I spoke to him & told him exactly how I felt about his using this

buffer system so he wouldn't have to waste his valuable time speaking with

his patients himself. I don't think we get upset simply because we are so

dependent on the doctors. For myself, its also the disappointment in the

doctor's character. I had thought he was a caring person, as well as a good

clinician. It hurts to find a lack of caring in someone that I thought

better of. I can't help but feel that if he treats me like this, how is he

with new patients that he hardly knows. Jang >>

I understand somewhat the frustration about the doctors. You feel like you

know them and then you find out how they treat the regular pts. I mean for a

while he treats you like a colleague, and then your just nuisance.

I say, go girl..I find that it brings peace to myself if I let them know how

I feel. It's risky, though, if you are forced to have them for your doctor,

I have to practice restraint of tongue, a lot.

Karyn

[Guest guest]

In a message dated 9/4/00 5:07:10 PM Eastern Daylight Time, jang2@...

writes:

<<

I guess I'm most surprised at how upset I am at another scraping-away of the

old trust & respect for physicians those of us of " a certain age " were

accustomed to feeling. Its one more disillusionment... one more experience

with people who should care, not caring. Sorry to be so down today........

jang

>>

Hi Jang, you have reason to be down. Your doctor just gave you a body slam.

I know exactly how you feel because I have been there myself many times. I

have absolutely no respect for most of the doctors I come in contact with. I

am always watching what I ask them for fear that I might say the wrong thing

and set them off. Their abuse to patients has gotten out of hand. When I

was a child I remember being sick and a doctor coming to my house. He was

kind and patient with me and his rewards were very meager. His clothing,

etc., showed that he didn't have much of an income being a doctor. But he

sure was kind. I find that today doctor's have so many patients that their

job become routine. Just like going to the hair dresser and getting a bad

haircut because the beautician was not focused that day. Who cares, she

still gets her money and so does the doctor. The insurance companies see to

that. I am so glad that you spoke your mind. Good for you. Shirley

[Guest guest]

Jang,

Your words could have been mine. My doctor was never a colleague, but one of

the reasons I have been with him for so long is that I respected his

character. I felt that he truly cared about his patients.

[Guest guest]

Shirley,

It is frustrating to be treated badly by doctors. I think they forget that

we are their customers as well as their patients. Most of the time we are

very well paying customers, too.

[Guest guest]

In a message dated 9/4/00 6:39:43 PM Eastern Daylight Time, loggiekw@...

writes:

<< -------------------------------------------------------------->

Shirley,

It is frustrating to be treated badly by doctors. I think they forget that

we are their customers as well as their patients. Most of the time we are

very well paying customers, too.

>>

You are so right . I wish there was a way to make them once again know

that they need us too. They have forgotten who pays their bills. I know

this sounds mean spirited but someday they will be very ill also then maybe

they will realize what their patients were going thru. This is a subject

that makes me very angry. I normally am a passive person but doctors

mistreating sick people is unacceptable. I am really on my soapbox. lol

Shirley

[Guest guest]

--

>I understand somewhat the frustration about the doctors. You feel like you know

them and then you find out how they treat the regular pts. I mean for a while he

treats you like a colleague, and then your just nuisance.

>

>I say, go girl..I find that it brings peace to myself if I let them know how I

feel. It's risky, though, if you are forced to have them for your doctor,

>

>I have to practice restraint of tongue, a lot.

>

>Karyn

Actually, Karyn, its more than that. I went to this doctor because I thought he

treated his patients well; I thought he cared about his patients as people, not

just as customers to be sloughed off with the minimum acceptable time and

effort. I had thought of him as someone who would try to do the right thing. I

thought he had a degree of caring about the people who looked to him for medical

care. This was another harsh bump with reality; that someone I had thought had

medical ethics and looked at being a physician as more than " just a job " had

feet of clay. I wasn't expecting special treatment because we had been

colleagues; I was expecting concern because I was a patient with a sudden

decline in health. I try to treat my patients to the best of my ability & had

thought this doctor felt the same way about his practice. Its disappointment in

the character of the man more than in the specific treatment.

I guess I'm most surprised at how upset I am at another scraping-away of the old

trust & respect for physicians those of us of " a certain age " were accustomed to

feeling. Its one more disillusionment... one more experience with people who

should care, not caring. Sorry to be so down today........

jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

[Guest guest]

In a message dated 9/4/00 5:07:13 PM Eastern Daylight Time, jang2@...

writes:

<<Sorry to be so down today........ jang >>

Hold your head up . .

Hold your head up . .

Hold your head high . . .

Someone else can provide the name of the group and song title and then you

can go to napster.com

and download the whole inspirational song.

hang tough and spit in the eye of the hangman

Poncho

[Guest guest]

In a message dated 9/4/00 10:39:00 PM Eastern Daylight Time,

poncho9191@... writes:

<<

<<Sorry to be so down today........ jang >>

Hold your head up . .

Hold your head up . .

Hold your head high . . .

Someone else can provide the name of the group and song title and then you

can go to napster.com

and download the whole inspirational song.

hang tough and spit in the eye of the hangman

Poncho >>

I like it Poncho. I have been crying all evening and I needed the song you

just sent. Thanks, Shirley

[Guest guest]

In a message dated 9/4/00 2:07:09 PM Pacific Daylight Time, jang2@...

writes:

<< I guess I'm most surprised at how upset I am at another scraping-away of

the Prevent thie]0old trust & respect for physicians those of us of " a

certain age " were accustomed to feeling. Its one more disillusionment ...

one more experience with people who should care, not caring. Sorry to be so

down today........ Jang >>

Hi Jang,

I am so sorry that you are having a rough time. It's one more of those things

that we cannot seem to control. My disillusionment comes from how quickly the

doctors are comfortable closing my chart with a notation of " Idiopathic, or

unknown cause. " I am not talking about the Pancreatitis, but what seems

logically a cause of the Pancreatitis. What I find distressing in your post

is that you presented having a recent sudden change in your health. That

always warrants aggressive diagnostics, I think.

Good luck. Gentle prayers.

Karyn

[Guest guest]

Jang,

Thanks for your response. I think my mom is more worried about me than I am.

I have not been diagnosed with chronic pancreatitis and actually have only

had one documentable case of acute pancreatitis. That was when all this

began, back in January. The latest ERCP showed delayed emptying of the

bile duct and polyps in the duodenal papilla. The gastro did a

sphincterotomy and the report shows the duct drained properly after

sphincterotomy. She pronounced me cured and says all pain now is coming from

IBS, which is causing me to have too much gas in my stomach.

I'm really not buying her assessment. If this is as good as its going to

get, then I will jjust approach this from a pain management point of view and

make the best of the hand life has dealt me. However, I feel as though I

need to have a logical answer for my continued pain. Maybe I am just

grasping at straws. I don't know. I'm just not ready to give up yet.

I made an appt with a pain mgmt doc. I will talk to him tomorrow. I went to

a pain mgmt doc once before. I had continuing problems with my foot

following surgery. The foot was burning 24 hours a day. They decided I had

Reflex Sympathetic Dystrophy (RSD) and sent me to pain mgmt doc. He did one

nerve block and the burning pain was gone instantly and it has never come

back. He told me I did have RSD and that I was very lucky they caught it so

early. It's now been 5 years and I've had only minimal problems with the

foot since then. I know that pain mgmt docs can sometimes provide a lot of

help.

[Guest guest]

--

>My family doc sent me an e-mail in response to the one I sent him. I really

didn't expect to hear back from him. I'm not sure what I'm going to do about a

family doc now.

>,

, that was nice for your doctor to answer your email; it sounds like you

caught him on a bad day or maybe it was just miscommunication. I have not had

the courtesy of a return call from my (ex)primary doctor despite his office

person calling to say he was busy seeing patients & was going to call when

finished. That call was last Thursday, so the poor soul must be really

exhausted if he is still in the midst of Thursday's office hours.

It sounds like your mom thinks that a cure for your pancreatitis is just a

matter of finding the right doctor. Only you can decide if you are willing to

go through another battery of tests. You have to know in your heart that you

have done everything you can to get rid of the pancreatitis. When you feel

you've gone as far as possible to find a cause/cure, you'll be ready to look for

the best pain relief possible. Unfortunately, no one can make these decisions

for you; you have to decide what you are able & willing to do.

Good luck. I hope you were able to rest & get the pain under control.

jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.