IN response

[Guest guest]

Ok...let's say this over...I was not suggesting that genetic testing

is the ANSWER. What I am saying is that there are thousands of

people with this disease and have no clue why. At least 75% of the

doctors treating these people have no idea about this test. I was

told when I had my first stent placement that I was being sent to a

doctor who is noted in this disease and if anything could be done,

he would be the one to know. He is also a professor who teaches

interns at the hospital where he is on staff. When my surgery was

over, he came out of the operating room smiling and saying he found

the problem that I would not have another attack because he found

that my tubes inside were backwards and mis-shapen. I was good for

7 whole months, believing I was cured and wham, right back in the

hospital with an even worse episode. It took a year and a half to

get this genetic test done and talk to a genetic counselor who told

me that mis-shapen tubes are an identifier of people with CF with

only pancreatitis as a symptom. I felt cheated and scared that

maybe the surgery was a mistake. Because now after I have had a

second stent placement, I have been in the hospital almost every

other week. Before any of the surgeries, I averaged about 5 to 6

times a year. I didn't mean to make anyone angry, but knowledge is

power and just to know why is in itself satisfying. I ask you

this....if you had a disease and noone could tell you why you have

it, wouldn't you do anything and everything possible to find the

cause? Maybe genetic testing won't find anything, but doesn't that

rule out some major causes? Either way it is a good idea because if

you do have the gene, you know where to be looking for answers and

will be talking to the right people and if not, you won't be wasting

your time or left wondering. Either way its a good outcome.

Sincerely, Dennis

[Guest guest]

-Dennis,

I wholeheartedly AGREE!!! I went through BS with trying to find out

what was wrong with my daughter. She had Batten's disease which is

very often misdiagnosed. I was a Very persistant Bitch and got an

answer rather quickly as to the beast that was killing the joy of my

life. Pardon me for misinterpreting what you said. All avenues should

be explored and we all should bring up every possibility to our

health care providers and Insist on having tests done to rule out

probable causes. Unfortunatly the insurance companies feel that tests

performed to rule out possible causes of anything are not worth the

cost. My how things have changed over the years. In trying to cut

unnecessary costs the insurance companies have compromised our health.

As I said in my apology, I've been having the worse time of my life

the past 2 days with everything going wrong...just the little details

of moving etc. trying to make my mother understand that I do not feel

the best...no panc pain but pain everywhere else and constant

insomnia....as well as being reminded by her that I caused ALL of my

physical ailments....Funny.......I never knew a child of 2 years old

causing her rape by a 13 yr old boy, a child of 5 years old being

diagnosed with probable juvenile arthritis and possible degenerative

muscle disease........HMMMMMMMMMMM The Chronic Pancreatitis I will

discount any prior indicators to my own ALCOHOL ADDICTION. YES, I AM

AN ALCOHOLIC AND CAUSED MANY MEDICAL PROBLEMS TO MY BODY. Suppose I

should print this and give it to mom.....

Again, I apologize dennis if I took what you said the wrong way.

There are many things that cause cp and other ailments......all

avenues need to be explored and we as patients need to suggest to our

Drs tests that are relevent.

pEACE,

mARY

-- In pancreatitis@y..., " runthefox65 " wrote:

> Ok...let's say this over...I was not suggesting that genetic

testing

> is the ANSWER. What I am saying is that there are thousands of

> people with this disease and have no clue why. At least 75% of the

> doctors treating these people have no idea about this test. I was

> told when I had my first stent placement that I was being sent to a

> doctor who is noted in this disease and if anything could be done,

> he would be the one to know. He is also a professor who teaches

> interns at the hospital where he is on staff. When my surgery was

> over, he came out of the operating room smiling and saying he found

> the problem that I would not have another attack because he found

> that my tubes inside were backwards and mis-shapen. I was good for

> 7 whole months, believing I was cured and wham, right back in the

> hospital with an even worse episode. It took a year and a half to

> get this genetic test done and talk to a genetic counselor who told

> me that mis-shapen tubes are an identifier of people with CF with

> only pancreatitis as a symptom. I felt cheated and scared that

> maybe the surgery was a mistake. Because now after I have had a

> second stent placement, I have been in the hospital almost every

> other week. Before any of the surgeries, I averaged about 5 to 6

> times a year. I didn't mean to make anyone angry, but knowledge is

> power and just to know why is in itself satisfying. I ask you

> this....if you had a disease and noone could tell you why you have

> it, wouldn't you do anything and everything possible to find the

> cause? Maybe genetic testing won't find anything, but doesn't that

> rule out some major causes? Either way it is a good idea because

if

> you do have the gene, you know where to be looking for answers and

> will be talking to the right people and if not, you won't be

wasting

> your time or left wondering. Either way its a good outcome.

>

> Sincerely, Dennis