(unknown)

May 15, 2002

Hi:

There was a recent discussion here about the pro/cons of having ones

gallbladder removed. Most say they didn't have significant problems until

afterward- with severe abdomianl pain,etc. I was one of those. However, let

me offer you this perspective. I waited 2 years to have my GB out because

they were not sure it was the cause. I too had sludge, and the Hida scan

demonstrated such. So i waited, more tests,stress, etc... It wasn't until I

screamed enough! and a FP doc listened that they decided to go ahead with my

GB operation. THey found not only sludge, but a chronic infection. I

believe, and they do as well, that the chronic infection contributed to my

CP. I have pancreatic diviusm, but up until then did not have problems. So

what did I learn, and what would I do differently? I WOULD NOT wait to see

if that was the problem. I would go ahead with the surgery. Even knowing all

of the problems I have had since. A bad GB can CAUSE pancreatitis. I would

consider a second opinion. Best of luck to you.

in SC

>

>Reply-To: pancreatitis

>To: pancreatitis

>Subject: (unknown)

>Date: Wed, 15 May 2002 02:27:20 -0000

>

>Hi Everyone!!

>I am new here and wanted to say Hi!! I have been having many

>problems with abdominal pain that radiates into my back!! It is very

>painful and almost unbearable!! I have been dealing with the doctors

>for about a month and a half... First they thought it was my

>gallbladder...i had a ultrasound and a hidascan. The ultrasound

>showed sludge and the hidascan showed that my gallbladder wasnt

>emptying at a normal rate. The doc still isnt positive that is what

>is causing my problems. I had another attack today and went in...he

>said he thinks it could be an ulcer but now he is concerned because

>what i describe as my symptoms sounds like pancreatitis. I have no

>idea what it even is!!! Today was the first day I heard the word!

>But let me tell ya whatever it is that I have it is very very

>painful!! They took a bunch of blood today to check for

>pancreatitis...and they are supposed to call me tomorrow to let me

>know what the test showed. Can you tell me what the common symptoms

>are of pancreatitis?? Thank you so much for your help!!!!

>

_________________________________________________________________

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May 16, 2002

--- rdbrk2000 rdbrk2000@...> wrote:

Wow! I don't know exactly what I have but my story is

so similar to yours I can't almost believe it. My

name is , I have had these attacks for years with

no medical treatment. I went to the hospital last

year and they told me I have fatty liver and to quit

drinking, I said that I didn't drink, she said you

must drink and that I need to stop. Well, like you, I

would stop if I did drink! I had my gallbladder

removed, and have had two sons. I am a criminal

justice student, and I just gave a speech yesterday

and afterwards I had a really bad attack. If you find

out any more information, I would appreciate knowing.

>

> Heidi,

> Thank you for the welcome to the group. Ihave had

> finals

> all week in school, finally have a little free time

> for pancreas reasearch. When I checked my email I

> had 157 messages from the pancreatitis support

> group. Took my all day to go through them but It's

> worth it to me to learn from other people.

>

> Heidi- you mentioned that

> you have articles you cansend me about

> pseudocysts, I would very much be greatful if you

> could!

> Heres a little of my history: I am 29

>

> Nov 1992 removal of gallbladder

>

> Aug. 1996 and May 1998 gave birth to sons

>

> Sept 1999 First attack- acute

> pancreatitis,pseudocyst size 1cm x 2cm in tail of

> pancreas, get acused of being an alcoholic because

> I have no gallbladder so what else would cause

> it

> frequent attacks and trips to ER, given IV

> fluids and pain meds

>

> 1st specialist- No treatment

>

> Jan. 2001 Another attack, pseudocyst grown, now

> 2.8 x 3cm in tail of pancreas

> 2nd specialist- wants surgury to remove tail of

> pancreas, I

> declined to get 2nd opinion

>

> 3rd specialist- told me to get off birth

> control pills, I did and my labs emmediatly became

> normal, for the first time in two years my amalase,

> and lypase were normal (thought that was the end of

> trouble)

>

> No problems for over a year feel fairly good, I

> go back to school

>

> April 2001- worst attack I

> ever had psudocyst grownbut only by one cm,

> amalase 1700, lypase 650, not extremely high but

> pain is pain, (I would rather give birth)

> labs normal now, have appointment with

> specialist for same old song and dance

>

> Have tried enzymes, felt no difference

>

> Just really frustrated because I dont know why

> I get this or what causes this, I wish I drank,

> then I would know what to quit!

>

> I do however notice a corolation of having

> an attack and having a stressful day. My

> lastattack (the worst one yet) was a very high

> stress day,I had a presentaion at school (i hate

> getting up in front of people) and my babysitter

> did not showup. I started having pain in

> class and it only got worse from there, dont even

> know how I drove myself home.

> Well thanks for letting me tell my little

> story, Donna

>

__________________________________________________

May 17, 2002

Patti,

I have found that stress play's a big part in CP.

It seems like everytime that I get real stressed out I have a bad attack.

Tammy - TN

May 17, 2002

Patti,

I have found that stress play's a big part in CP.

It seems like everytime that I get real stressed out I have a bad attack.

Tammy - TN

May 17, 2002

Dear Patti,

The most recent bout that I have had has definately been a result of stress.

That made me start to think about previous attacks. As I look back, I can

recall that the previous extremely painful or severe attack was at the same

time that I had undergone a very stressful event. And while I can't remember

the exact specifics of most cases, there do seem to be several that were

linked to extreme anxiety or stress. For me at least, I can say that there

is a DEFINATE and DIRECT link from CP attacks and stress/anxiety. No doubt

about it.

Peace,

Terry in KC

<< This still all new to me, do's anyone feel like there is a link between a

painful attack(chronic pancreatitis) and stress? Also some one mentioned

enzymes helping them and their Dr. said it doe's not help,well I take Lipram

4500, not much help for pain ,but it do's help keeping food in and gaining

weight, it helped me hope it can help you.Good Luck.

mpmaines@... - Patti >>

May 21, 2002

Patti,

if anyone hasn't already replied, yes, there is a link

between stress and CP. It can bring on a even a full-blown,

need to be in the hospital attack, let alone make your pain

level for the day higher.

Kimber

--

Kimber

hominid2@...

Southwest Representative

Pancreatitis Association, International

May 27, 2002

Aletta,

You are still missing our point. People need to trust their doctors.

They need to follow the doctor's instructions. If they stay with a

doctor for many years as Charlotte and I did, you form a working

relationship with the doctor and the doctor has a feel for where you are

coming from. Most of the patients on the list go to doctors in the

USA. Most have had a specific family doctor who knows them. They HAVE

been diagnosed as probable MSA by a neurologist and given some sort of

medicine for it. You keep mentioning that you take medicines that are

NOT recommended for MSA patients and are pain killers. While some

people with MSA have pain it is NOT usually associated with early to mid

MSA (still walking) patients. So the majority of MSA patients should

not be on them as a pain killer if it makes their movement worse.

If I had MSA and went to my doctor asking for a medicine that had side

effects such as OH, constipation, and ataxia - I would think they would

tend to believe that I was a bit unbalanced and possibly ignore me when

I asked for other medicines mentioned here on the list that may help MSA

patients. If you notice, I often tell people that a certain medicine

may help and mention possible side effects such as Sinemet having

possible side effects of OH, dyskinesia and hallucinations (especially

if you overdose). I also tell them to ask their doctors about the

possibility of using the drug for a specific symptom.

I am not about to get into a discussion of politics in Canada as I do

NOT have firsthand knowledge of healthcare there. You are free to write

whatever you want about general healthcare issues there. Your

healthcare system is at least allowing stem cell research on existing

blastocysts which is more than is allowed in the USA. The poor here in

the USA do NOT have as much access to specialists as you do in Canada.

I have seen firsthand that Australia is having difficulties with

healthcare, but I also saw a doctor come out to meet me and take the

time to talk for a minute about treatment for MSA there. I do write my

legislators constantly about what I perceive as wrongs in our system of

government (lots).

I personally feel that there ARE better healthcare systems in the world

than the USA's system. But as bad as ours is for the poor, there ARE

doctors who do charity work for free. The major problem here is that

many areas have no one willing to work for free and too many people are

trying to abuse the system. I have talked to some Canadians and some of

them feel they have the best healthcare system in the world. Granted

they are from urban areas in the eastern provences and that may give

them more access than your area. Therefore I have to assume that Canada

is much like the USA and there are good and bad doctors as everywhere.

I am NOT trying to judge your healthcare system as good or bad. I DO

know several people who came here from Canada, worked a couple of years

and went back because they said it was better in Canada. In addition, I

know people who go to Canada to buy prescription drugs as they are

cheaper there than here, so that makes me ask why you don't have some

luck with your system.

I was a caregiver for almost 12 years, but is a patient not a

caregiver - his wife is the caregiver.

Again for the record - I want people on the list to try to work WITH

their doctors and not condemn all doctors for the few that are bad. I

have yet to meet a perfect person in any field.

I also feel that you need to focus on getting the specific care you need

for specific symptoms. I still read most complaints from you as pain

related which is NOT usual for MSA. Maybe the doctor you trust could

talk to a MSA specialist in the USA or a Canadian center where they do

work with movement disorders and find a way to help you.

Take care, Bill Werre

May 27, 2002

At 5/27/02 04:10 PM Monday, you wrote:

Aletta,

You are still missing

our??

point. People need to trust their doctors.

They need to follow the doctor's instructions. If they stay with

a

doctor for many years as Charlotte and I did, you form a working

relationship with the doctor and the doctor has a feel for where you

are

coming from. Most of the patients on the list go to doctors in

the

USA. Most have had a specific family doctor who knows them.

They HAVE

been diagnosed as probable MSA by a neurologist and given some sort

of

medicine for it. You keep mentioning that you take medicines that

are

NOT recommended for MSA patients and are pain killers.

1. Neurontin, which I take is

frequently given to MSA patients, many on this list, including me

2. Bethanechol Chloride I take because, frankly, without it I am unable

to pee, it is not a painkiller

3. Halcion .25 mg is not a painkiller, it induces me to sleep, no other

sleep aids have been effective, and were tried first

4. Dex-amphetamine is not a painkiller, without it I am unable to fully

wake and function - some on the list are taking Ritalin for this, or

pro-vigil, which is not available in Canada

5. the Buscopan was a trail the doctor gave me, to ease bowel spasm, the

other benefits were not expected, I don't know that he will continue to

perscribe, I am just happy I can enjoy my life better in the

meantime

6. the 292's are for pain, dreadful agonizing pain, the combo of headach,

cranial nerve and 'coat hanger' pain, to take as needed, with a prior

heart attack and polycythemia codeine is cobined with ASA rather than

Tylenol since I need to take aspirin anyway and Tylenol never helped

relieve the pain - I've yet to exceed four pills in one day - I use them

sparinly, even though my doctor sees no need to be conservative, he sees

pain as stress, I believe he is right, right for me

While some

people with MSA have pain it is NOT usually associated with early to

mid

MSA (still walking) patients. So the majority of MSA patients

should

not be on them as a pain killer if it makes their movement

worse.

In my lifetime I will not know that I have MSA,

that I have pain, however, is not up for argument.

If I had MSA

and went to my doctor asking for a medicine that had side

effects such as OH, constipation, and ataxia - I would think they

would

tend to believe that I was a bit unbalanced and possibly ignore me

when

I asked for other medicines mentioned here on the list that may help

MSA

patients. If you notice, I often tell people that a certain

medicine

may help and mention possible side effects such as Sinemet having

possible side effects of OH, dyskinesia and hallucinations

(especially

if you overdose). I also tell them to ask their doctors about

the

possibility of using the drug for a specific symptom.

I am not about to get into a discussion of politics in Canada as I

do

NOT have firsthand knowledge of healthcare there. You are free to

write

whatever you want about general healthcare issues there.

Big of you to give permission.

Your

healthcare system is at least allowing stem cell research on

existing

blastocysts which is more than is allowed in the USA.

That may or may not prove to be useful, and for

myself I would choose not to have stem cells that are not originally my

DNA - but that is personal choice.

The poor here

in the USA do NOT have as much access to specialists as you do in

Canada.

The entire province of Saskatchewan has only one

MRI machine. It took one year for myself, and my daughter to have

an 'emergency' MRI in BC - hardly and uncommon experience. I have

had to wait 6 months to get an appointment with a gynecologist, because I

have 'suspicious' growths, the Ultrasound was more than a year ago.

There is a pretence of universal access, those with a few thousand to

spare can get care in Bellingham or Seattle or even Alberta (medical

centres place ads in our local newspapers) In BC residents PAY monthly

premiums (which have just recently been doubled - and was blamed on

greedy doctors wnating more money, hence the current dispute) for thier

health care plan - it is not free and patients uninsured are and

have been turned down, even in emergencies, some crossed the border

(recently a man with a fractured leg in a car accident) to get

care). Bottom line is that everyone feels for the poor, but few

(note the absence or absolutes) wants to get their hands dirty dealing

with it. Today I still cannot find a doctor to renew

presciptions.

I have seen

firsthand that Australia is having difficulties with

healthcare, but I also saw a doctor come out to meet me and take the

time to talk for a minute about treatment for MSA there.

Did I say no doctor will speak with me?

Courtesy is far and away not the same as care.

I do write

my

legislators constantly about what I perceive as wrongs in our system

of

government (lots).

Good, everyone should.

I personally

feel that there ARE better healthcare systems in the world

than the USA's system. But as bad as ours is for the poor, there

ARE

doctors who do charity work for free. The major problem here is

that

many areas have no one willing to work for free and too many people

are

trying to abuse the system. I have talked to some Canadians and

some of

them feel they have the best healthcare system in the world.

You notice these things less when you have no need,

you are healthy, everyone tells you Canada has the best health care

system

Granted

they are from urban areas in the eastern provences and that may give

them more access than your area. Therefore I have to assume that

Canada

is much like the USA and there are good and bad doctors as

everywhere.

I am NOT trying to judge your healthcare system as good or bad. I

DO

know several people who came here from Canada, worked a couple of

years

and went back because they said it was better in Canada. In

addition, I

know people who go to Canada to buy prescription drugs as they are

cheaper there than here, so that makes me ask why you don't have

some

luck with your system.

Like so many on this list my resources have

dwindled, spending many years trying to just get a diagnosis of any

sort. Since I am now at the bottom of the trasheap, I only have

access to medications that are available in generic form, the rest I

would have to pay out of pocket, and then it would have to be a choice

between eating or taking meds. More than once I have been told

after the pills were prepared that it would cost $XXX (amounts between 50

- 185), I have priorities, I'd skip the meals so my son can have his meds

(Cipro is not covered), but if it's for me I leave them at the counter,

and drag my dejected self home. While I was still working benefits

that came with the job dealt with that. No point even starting meds

you cannot afford to keep up. I am not alone, transplant patients

don't have coverage for anti-rejection drugs either, my mother's insulin

is also no longer covered. Almost invariably, the newer, better

medications are not covered. When a new drug is made available in

the US Canada will get it years later, even if your plan would cover

it. Calling it a " Universal Health Care Plan " is a joke,

a very bad joke.

I was a

caregiver for almost 12 years, but is a patient not a

caregiver - his wife is the caregiver.

I'm not sure why you pointed that out I knew that,

I think it relates to my mentioning husbands taking up fighting to help

their wives - referred to his wife being poorly dealt with and his

defending her - the reference had nothing to do with caregiving - merely

tried to point out that some women have no option but to do their own

fighting

Again for the

record - I want people on the list to try to work WITH

their doctors and not condemn all doctors for the few that are bad.

I

have yet to meet a perfect person in any field.

Am I being accused of blaming ALL doctors?

Because that is the tone as I am perceiving it.

I also feel

that you need to focus on getting the specific care you need

for specific symptoms. I still read most complaints from you as

pain

Go back a few days and you'll probably note that,

ringing in the ears, OH and constipation are far higher on that list than

pain. I also know (and to a lesser extent) trust that my doctor/s

is/are doing all they can given constraints. They're no happier

about the healthcare situation than I am. I was slated for several

programs which were cut as unecessary. In BC we save grizzlies and

salmon at the expense of people.

related which

is NOT usual for MSA. Maybe the doctor you trust could

talk to a MSA specialist in the USA or a Canadian center where they

do

work with movement disorders and find a way to help

you.

They would do that, gladly, but I'd have to pay,

and I just cannot. Tough cookies. There are no MSA specialist

here at all. That is what makes this list critical to me, though

like the Citrucel (Glaxo has not returned my calls yet), what you Yanks

have access to is not true necessarily for me and those living

elsewhere.

Take

care, Bill Werre

Take care ,

If you do not

wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

May 27, 2002

Aletta,

Here are all the medicines you take according to your last note:

1. Neurontin, which I take is frequently given

to MSA patients, many on this list, including me

Yes this seems to be the only one you take which

is normally used for MSA patients are you aware that you are not supposed

to drink alcohol while taking it? Yes it also has side effects that

resemble MSA = Gabapentin may cause blurred vision, double

vision, clumsiness, unsteadiness, dizziness, drowsiness, or trouble in

thinking. Make sure you know how you react to this medicine before

you drive, use machines, or do anything else that could be dangerous if

you are not alert, well-coordinated, or able to think or see well . If

these reactions are especially bothersome, check with your doctor.

2. Bethanechol Chloride I take because, frankly,

without it I am unable to pee, it is not a painkiller

I could not find this, there may be others that

take it

3. Halcion .25 mg is not a painkiller, it induces

me to sleep, no other sleep aids have been effective, and were tried first

If you are taking a benzodiazepine for insomnia (trouble in sleeping):

If you think you need this medicine for

more than 7 to 10 days, be sure to discuss it with your doctor. Insomnia

that lasts longer than this may be a sign of another medical problem.

You may have difficulty sleeping (rebound insomnia) for the first few nights

after you stop taking this medicine.

Benzodiazepines may be habit-forming (causing mental or physical

dependence) , especially when taken for a long time or in high doses. Some

signs of dependence on benzodiazepines are:

A strong desire or need to continue taking

the medicine.

A need to increase the dose to receive

the effects of the medicine.

Withdrawal effects (for example, irritability,

nervousness, trouble in sleeping, abdominal or

stomach cramps, trembling or shaking)

occurring after the medicine is stopped.

4. Dex-amphetamine is not a painkiller, without

it I am unable to fully wake and function - some on the list are taking

Ritalin for this, or pro-vigil, which is not available in Canada

Again note: "Amphetamines should not be used for weight loss or

weight control or to combat unusual tiredness or weakness or replace

rest. When used for these purposes, they may be dangerous to your health."

5. the Buscopan was a trail the doctor gave me,

to ease bowel spasm, the other benefits were not expected, I don't know

that he will continue to perscribe, I am just happy I can enjoy

my life better in the meantime

I already noted that this medicine causes MSA like symptoms, experts

in gastro problems do NOT believe this sort of drug is good for MSA patients.

Is "bowel spasm" constipation?

6. the 292's are for pain, dreadful agonizing

pain, the combo of headach, cranial nerve and 'coat hanger' pain, to take

as needed, with a prior heart attack and polycythemia codeine is

cobined with ASA rather than Tylenol since I

need to take aspirin anyway and Tylenol never helped relieve the pain -

I've yet to exceed four pills in one day - I use them sparinly, even

though my doctor sees no need to be conservative,

he sees pain as stress, I believe he is right, right for me

I have pointed out several times that codeine

causes MSA like symptoms.

I am happy you get relief from pain and are able

to sleep

Now what do you take for MSA symptoms?

Take care, Bill

May 27, 2002

AMEN!!!

Marilyn in TN

>

> Reply-To: shydrager

> Date: Mon, 27 May 2002 19:10:55 -0400

> To: shydrager

> Subject: Re: (unknown)

>

> Aletta,

>

> You are still missing our point. People need to trust their doctors.

> They need to follow the doctor's instructions. If they stay with a

> doctor for many years as Charlotte and I did, you form a working

> relationship with the doctor and the doctor has a feel for where you are

> coming from. Most of the patients on the list go to doctors in the

> USA. Most have had a specific family doctor who knows them. They HAVE

> been diagnosed as probable MSA by a neurologist and given some sort of

> medicine for it. You keep mentioning that you take medicines that are

> NOT recommended for MSA patients and are pain killers. While some

> people with MSA have pain it is NOT usually associated with early to mid

> MSA (still walking) patients. So the majority of MSA patients should

> not be on them as a pain killer if it makes their movement worse.

>

> If I had MSA and went to my doctor asking for a medicine that had side

> effects such as OH, constipation, and ataxia - I would think they would

> tend to believe that I was a bit unbalanced and possibly ignore me when

> I asked for other medicines mentioned here on the list that may help MSA

> patients. If you notice, I often tell people that a certain medicine

> may help and mention possible side effects such as Sinemet having

> possible side effects of OH, dyskinesia and hallucinations (especially

> if you overdose). I also tell them to ask their doctors about the

> possibility of using the drug for a specific symptom.

>

> I am not about to get into a discussion of politics in Canada as I do

> NOT have firsthand knowledge of healthcare there. You are free to write

> whatever you want about general healthcare issues there. Your

> healthcare system is at least allowing stem cell research on existing

> blastocysts which is more than is allowed in the USA. The poor here in

> the USA do NOT have as much access to specialists as you do in Canada.

> I have seen firsthand that Australia is having difficulties with

> healthcare, but I also saw a doctor come out to meet me and take the

> time to talk for a minute about treatment for MSA there. I do write my

> legislators constantly about what I perceive as wrongs in our system of

> government (lots).

>

> I personally feel that there ARE better healthcare systems in the world

> than the USA's system. But as bad as ours is for the poor, there ARE

> doctors who do charity work for free. The major problem here is that

> many areas have no one willing to work for free and too many people are

> trying to abuse the system. I have talked to some Canadians and some of

> them feel they have the best healthcare system in the world. Granted

> they are from urban areas in the eastern provences and that may give

> them more access than your area. Therefore I have to assume that Canada

> is much like the USA and there are good and bad doctors as everywhere.

> I am NOT trying to judge your healthcare system as good or bad. I DO

> know several people who came here from Canada, worked a couple of years

> and went back because they said it was better in Canada. In addition, I

> know people who go to Canada to buy prescription drugs as they are

> cheaper there than here, so that makes me ask why you don't have some

> luck with your system.

>

> I was a caregiver for almost 12 years, but is a patient not a

> caregiver - his wife is the caregiver.

>

> Again for the record - I want people on the list to try to work WITH

> their doctors and not condemn all doctors for the few that are bad. I

> have yet to meet a perfect person in any field.

>

> I also feel that you need to focus on getting the specific care you need

> for specific symptoms. I still read most complaints from you as pain

> related which is NOT usual for MSA. Maybe the doctor you trust could

> talk to a MSA specialist in the USA or a Canadian center where they do

> work with movement disorders and find a way to help you.

>

> Take care, Bill Werre

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

May 27, 2002