Re: Hi All, new here and undiagnosedHi

[Guest guest]

Hi Margie

Yes I was desperate for 3 years before being diagnosed with Achalasia.

Yes I had all the tests, started out as esophagitis.

YOU must insist on a manometry test, this is the final diagnosis for Achalasia.

Where are you in Canada and your age? I have family in Saskatoon, Toronto and

Calgary. Very familiar with wait times!

I came from Toronto many years ago, now in the US. I lost 35 lbs very quickly.

Found out how to manage it, no operation or dilations.

Clear out the e every night with 16 oz of water, the junk will come out. I use a

spit up glass, or stand over the toilet at a forward angle with my hand against

the wall,.

Butter opens the LES and acts as lubrication, add on toasted bread. really

toasted!.Use a Coke the help it go down. Use small brown beans with a bit of

water and add a teaspoon of butter, that goes down great for me!

A medical book shows the CO2 also opens the LES, get a can of COKE and try to

swallow it.

Use Magmesium 250 mg twice, it will open the LES, if the BM gets too loose

reduce it to one.

Go back 6-12 months and search out comments form this site, like ray ,notan,

richard, sandy. Look for an expert and follow using " search "

Keep off Nexium, it will screw you up, making food hard to digest.Sometimes it

is needed, but until you get a diagnosis, then consder.

PS if you have money go to Mayo or Cleveland clinic. Maybe Canada health may

help pay for it. At least get a manometry test as soon as possible. In the US

you should be able to get this test in a few days,it take 30 minutes, at hunreds

of hospitals like NY or LA.

Ray CA OC 81

>

> Hi All,

> I have been through the ringer tis past year and a half. Have had test after

test, and the doctors can't find anything wrong with me that would be the cause

of my symptoms:

>

> Lost 42 lbs. in 9 months (not dieting)

> Constant pain in upper centre abdomen and chest behind breastbone worse after

eating anything

> Afraid to eat

> Feels like food sitting in my lower esophagus

> Not Heartburn

> Sometimes feels like I am having a heart attack (went to ER 2 months ago)

> Nausea

> Fatigue

>

> Have had the following tests:

> Blood Tests (normal)

> Barium Swallow ( HH, GERD)

> Chest X-rays (normal)

> Ultrasound (normal)

> Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

> CT scan (normal)

>

> What meds and other things I have tried

> Raised head of bed

> Eating smaller portions

> Taking smaller bites and chew, chew, chewing

> No alcohol

> No carbonated beverages

> Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest foods

eg: (cabbage, lettuce, uncooked veggies)

> Thought maybe I have problem with Pancreas, so stopped eating fatty foods

>

> Tried Pantaloc, Prevacid, Nexium, and Tecta...did not take away the pain

> Doc put me on Domperidone...tried for 30 days...did not help at all...made my

heart race

> Now the GI (who had the worst bedside manner ever! And who said there is

nothing she can do for me...just blew off the Surgeon's suggestion of Motility

disorder!) put me on Viokase (pancreatic enzymes). I am afraid to take them, as

a Motility disorder hasn't been ruled out. Wouldn't digestive enzymes be

dangerous for my esophagus with Achalasia?

>

> I am trying to get an appointment with a new GI which in Canada could take

months! So in the meantime...I am trying very hard to live with this pain. My

husband asks me everyday how I am feeling...it is so disheartening to have to

say " the same " . I know he hopes that one day I could say I feel great! I wish

I could too!

> This has changed our lives drastically...we were to go to Toronto at Christmas

to spend time with my daughter who was going to be there from NYC, but I was so

sick in Dec., we had to cancel our plans. That was really hard.

>

> Has anyone else gone through test after test with no diagnosis...even though

you KNOW there is something wrong? What do you do then?

>

> Thanks for reading this...

> Margie

>

[Guest guest]

Ray,

 

You are an inspiration to this Board for how you have succeeded in coping with

this disease.

While I may not agree with you entirely as to everything you have written, the

proof in what you say is how you have been feeling, and by all measures yours

has been a success story.

 

________________________________

From: mer <ray_me_99@...>

achalasia

Sent: Wednesday, February 22, 2012 3:23 PM

Subject: Re: Hi All, new here and undiagnosedHi

 

Hi Margie

Yes I was desperate for 3 years before being diagnosed with Achalasia.

Yes I had all the tests, started out as esophagitis.

YOU must insist on a manometry test, this is the final diagnosis for Achalasia.

Where are you in Canada and your age? I have family in Saskatoon, Toronto and

Calgary. Very familiar with wait times!

I came from Toronto many years ago, now in the US. I lost 35 lbs very quickly.

Found out how to manage it, no operation or dilations.

Clear out the e every night with 16 oz of water, the junk will come out. I use a

spit up glass, or stand over the toilet at a forward angle with my hand against

the wall,.

Butter opens the LES and acts as lubrication, add on toasted bread. really

toasted!.Use a Coke the help it go down. Use small brown beans with a bit of

water and add a teaspoon of butter, that goes down great for me!

A medical book shows the CO2 also opens the LES, get a can of COKE and try to

swallow it.

Use Magmesium 250 mg twice, it will open the LES, if the BM gets too loose

reduce it to one.

Go back 6-12 months and search out comments form this site, like ray ,notan,

richard, sandy. Look for an expert and follow using " search "

Keep off Nexium, it will screw you up, making food hard to digest.Sometimes it

is needed, but until you get a diagnosis, then consder.

PS if you have money go to Mayo or Cleveland clinic. Maybe Canada health may

help pay for it. At least get a manometry test as soon as possible. In the US

you should be able to get this test in a few days,it take 30 minutes, at hunreds

of hospitals like NY or LA.

Ray CA OC 81

>

> Hi All,

> I have been through the ringer tis past year and a half. Have had test after

test, and the doctors can't find anything wrong with me that would be the cause

of my symptoms:

>

> Lost 42 lbs. in 9 months (not dieting)

> Constant pain in upper centre abdomen and chest behind breastbone worse after

eating anything

> Afraid to eat

> Feels like food sitting in my lower esophagus

> Not Heartburn

> Sometimes feels like I am having a heart attack (went to ER 2 months ago)

> Nausea

> Fatigue

>

> Have had the following tests:

> Blood Tests (normal)

> Barium Swallow ( HH, GERD)

> Chest X-rays (normal)

> Ultrasound (normal)

> Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

> CT scan (normal)

>

> What meds and other things I have tried

> Raised head of bed

> Eating smaller portions

> Taking smaller bites and chew, chew, chewing

> No alcohol

> No carbonated beverages

> Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest foods

eg: (cabbage, lettuce, uncooked veggies)

> Thought maybe I have problem with Pancreas, so stopped eating fatty foods

>

> Tried Pantaloc, Prevacid, Nexium, and Tecta...did not take away the pain

> Doc put me on Domperidone...tried for 30 days...did not help at all...made my

heart race

> Now the GI (who had the worst bedside manner ever! And who said there is

nothing she can do for me...just blew off the Surgeon's suggestion of Motility

disorder!) put me on Viokase (pancreatic enzymes). I am afraid to take them, as

a Motility disorder hasn't been ruled out. Wouldn't digestive enzymes be

dangerous for my esophagus with Achalasia?

>

> I am trying to get an appointment with a new GI which in Canada could take

months! So in the meantime...I am trying very hard to live with this pain. My

husband asks me everyday how I am feeling...it is so disheartening to have to

say " the same " . I know he hopes that one day I could say I feel great! I wish I

could too!

> This has changed our lives drastically...we were to go to Toronto at Christmas

to spend time with my daughter who was going to be there from NYC, but I was so

sick in Dec., we had to cancel our plans. That was really hard.

>

> Has anyone else gone through test after test with no diagnosis...even though

you KNOW there is something wrong? What do you do then?

>

> Thanks for reading this...

> Margie

>

[Guest guest]

Margie,

Can you go to a teaching hospital that has a GI department? My GI took a

year to think of everything he knew, which wasn't muc, and failed to diagnose

me. Also I couldn't see one of the other GI's in his office as they dont

share patients!I lost 20 lbs. and was miserable. Isuggested to him that he

send me to Cedars Sinai and he thought that was a good idea! I walked into

the Dr at Cedars and walked into the office. The Dr. asked what's the

matter. I told him I was an 'air swallower'. He said no you are not. You have

achalasia. Then he introduced himself.

They did a Heller's Myotomy and Dor's Fundoplication and yes, I still have

achalasia! But I can eat, carefully and slowly with a rare regurgitation

and have to clear the E of foam and burps all the time. Other than that...I

am grateful...and still furious at a GI who did not know his business and

didn't have the good sense to ask another Dr for a consultation.

This group has so much knowledge and support. I have read daily entries for

3 years. Get the problem diagnosed and treated and research the past

entries.

Good luck

in Santa Barbara

In a message dated 2/22/2012 9:11:37 A.M. Pacific Standard Time,

margiekole@... writes:

Hi All,

I have been through the ringer tis past year and a half. Have had test

after test, and the doctors can't find anything wrong with me that would be

the cause of my symptoms:

Lost 42 lbs. in 9 months (not dieting)

Constant pain in upper centre abdomen and chest behind breastbone worse

after eating anything

Afraid to eat

Feels like food sitting in my lower esophagus

Not Heartburn

Sometimes feels like I am having a heart attack (went to ER 2 months ago)

Nausea

Fatigue

Have had the following tests:

Blood Tests (normal)

Barium Swallow ( HH, GERD)

Chest X-rays (normal)

Ultrasound (normal)

Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

CT scan (normal)

What meds and other things I have tried

Raised head of bed

Eating smaller portions

Taking smaller bites and chew, chew, chewing

No alcohol

No carbonated beverages

Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest

foods eg: (cabbage, lettuce, uncooked veggies)

Thought maybe I have problem with Pancreas, so stopped eating fatty foods

Tried Pantaloc, Prevacid, Nexium, and Tecta...did not take away the pain

Doc put me on Domperidone...tried for 30 days...did not help at all...made

my heart race

Now the GI (who had the worst bedside manner ever! And who said there is

nothing she can do for me...just blew off the Surgeon's suggestion of

Motility disorder!) put me on Viokase (pancreatic enzymes). I am afraid to take

them, as a Motility disorder hasn't been ruled out. Wouldn't digestive

enzymes be dangerous for my esophagus with Achalasia?

I am trying to get an appointment with a new GI which in Canada could take

months! So in the meantime...I am trying very hard to live with this pain.

My husband asks me everyday how I am feeling...it is so disheartening to

have to say " the same " . I know he hopes that one day I could say I feel

great! I wish I could too!

This has changed our lives drastically...we were to go to Toronto at

Christmas to spend time with my daughter who was going to be there from NYC,

but

I was so sick in Dec., we had to cancel our plans. That was really hard.

Has anyone else gone through test after test with no diagnosis...even

though you KNOW there is something wrong? What do you do then?

Thanks for reading this...

Margie

[Guest guest]

I went undiagnosed for over a year before I was finally sent to a GI who

actually knew what was happening. I even ended up having my gallbladder

removed because it was thought that it was causing my problems. I was put on

various meds several of which are for GERD, which I didn't have. I am now

scheduled for surgery in April. It has been a long two plus years. Your best

chance is to find a GI who is very familiar with A. Don't let them pressure

you into treatments you don't need. Stand your ground and ask for a

manometry test. It is the best test for A. This group is awesome. I know you

will find a wealth of information and support.

S

-- Hi All, new here and undiagnosedHi

Hi All,

I have been through the ringer tis past year and a half. Have had test

after test, and the doctors can't find anything wrong with me that would be

the cause of my symptoms:

Lost 42 lbs. in 9 months (not dieting)

Constant pain in upper centre abdomen and chest behind breastbone worse

after eating anything

Afraid to eat

Feels like food sitting in my lower esophagus

Not Heartburn

Sometimes feels like I am having a heart attack (went to ER 2 months ago)

Nausea

Fatigue

Have had the following tests:

Blood Tests (normal)

Barium Swallow ( HH, GERD)

Chest X-rays (normal)

Ultrasound (normal)

Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

CT scan (normal)

What meds and other things I have tried

Raised head of bed

Eating smaller portions

Taking smaller bites and chew, chew, chewing

No alcohol

No carbonated beverages

Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest

foods eg: (cabbage, lettuce, uncooked veggies)

Thought maybe I have problem with Pancreas, so stopped eating fatty foods

[Guest guest]

Having gall bladder out and being diagnosed with reflux sounds all too familiar!

Been there done that too!

>

> I went undiagnosed for over a year before I was finally sent to a GI who

> actually knew what was happening. I even ended up having my gallbladder

> removed because it was thought that it was causing my problems. I was put on

> various meds several of which are for GERD, which I didn't have. I am now

> scheduled for surgery in April. It has been a long two plus years. Your best

> chance is to find a GI who is very familiar with A. Don't let them pressure

> you into treatments you don't need. Stand your ground and ask for a

> manometry test. It is the best test for A. This group is awesome. I know you

> will find a wealth of information and support.

>

> S

>

>

>

>

> -- Hi All, new here and undiagnosedHi

>

> Hi All,

> I have been through the ringer tis past year and a half. Have had test

> after test, and the doctors can't find anything wrong with me that would be

> the cause of my symptoms:

>

> Lost 42 lbs. in 9 months (not dieting)

> Constant pain in upper centre abdomen and chest behind breastbone worse

> after eating anything

> Afraid to eat

> Feels like food sitting in my lower esophagus

> Not Heartburn

> Sometimes feels like I am having a heart attack (went to ER 2 months ago)

> Nausea

> Fatigue

>

> Have had the following tests:

> Blood Tests (normal)

> Barium Swallow ( HH, GERD)

> Chest X-rays (normal)

> Ultrasound (normal)

> Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

> CT scan (normal)

>

> What meds and other things I have tried

> Raised head of bed

> Eating smaller portions

> Taking smaller bites and chew, chew, chewing

> No alcohol

> No carbonated beverages

> Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest

> foods eg: (cabbage, lettuce, uncooked veggies)

> Thought maybe I have problem with Pancreas, so stopped eating fatty foods

>

>

>

[Guest guest]

Hi Margie,

 

It's very common to have a difficult time getting diagnosed remember these are

" rare " disorders.  If you have Achalasia there are 2 tests that are absolutely

necessary.....1. Baruim Swallow (which is an upper GI test) and the 2. Manometry

test.  The latter test is the best source to know if you have any motility in

your esophagus.  If you have achalasia, save yourself lots of run around and

ask for these tests! 

 

You may have other complications, but this would be where I would start.  Glad

you found this group. 

 

Julee in Oregon! 

________________________________

From: margiekole <margiekole@...>

achalasia

Sent: Wednesday, February 22, 2012 9:09 AM

Subject: Hi All, new here and undiagnosedHi

 

Hi All,

I have been through the ringer tis past year and a half. Have had test after

test, and the doctors can't find anything wrong with me that would be the cause

of my symptoms:

Lost 42 lbs. in 9 months (not dieting)

Constant pain in upper centre abdomen and chest behind breastbone worse after

eating anything

Afraid to eat

Feels like food sitting in my lower esophagus

Not Heartburn

Sometimes feels like I am having a heart attack (went to ER 2 months ago)

Nausea

Fatigue

Have had the following tests:

Blood Tests (normal)

Barium Swallow ( HH, GERD)

Chest X-rays (normal)

Ultrasound (normal)

Gastroscopy (inflamed esophagus, surgeon wondered if motility disorder)

CT scan (normal)

What meds and other things I have tried

Raised head of bed

Eating smaller portions

Taking smaller bites and chew, chew, chewing

No alcohol

No carbonated beverages

Stayed away from chocolate, mint, tomatoes, spicy foods, hard to digest foods

eg: (cabbage, lettuce, uncooked veggies)

Thought maybe I have problem with Pancreas, so stopped eating fatty foods

Tried Pantaloc, Prevacid, Nexium, and Tecta...did not take away the pain

Doc put me on Domperidone...tried for 30 days...did not help at all...made my

heart race

Now the GI (who had the worst bedside manner ever! And who said there is nothing

she can do for me...just blew off the Surgeon's suggestion of Motility

disorder!) put me on Viokase (pancreatic enzymes). I am afraid to take them, as

a Motility disorder hasn't been ruled out. Wouldn't digestive enzymes be

dangerous for my esophagus with Achalasia?

I am trying to get an appointment with a new GI which in Canada could take

months! So in the meantime...I am trying very hard to live with this pain. My

husband asks me everyday how I am feeling...it is so disheartening to have to

say " the same " . I know he hopes that one day I could say I feel great! I wish

I could too!

This has changed our lives drastically...we were to go to Toronto at Christmas

to spend time with my daughter who was going to be there from NYC, but I was so

sick in Dec., we had to cancel our plans. That was really hard.

Has anyone else gone through test after test with no diagnosis...even though you

KNOW there is something wrong? What do you do then?

Thanks for reading this...

Margie