Re: An introduction (Newbie)

[Guest guest]

Welcome to the group! You should find all of the answers that you

are searching for here - with LOTS of support. What course of action

is your doctor recommending?

> HI Everyone,

> My Name is Pete. I have recently had the esophageal motility, 2

> endoscopies, a barium swallow, and a gastric emptying. My doctor

told

> me I have achalasia. I don't seem to have it as bad as some appear

> to, from what I read.

>

> I can eat most food, but slowly. I sometimes get chest pains when

> eating. I have a nighttime cough, with occasional vomitting. I must

> drink lots of water when I eat or food gets stuck. I lost ten

pound,

> but could use to lose about 10 more so I don't mind that.

>

> I've adapted my eating habits, and avoid beef, bread, and pasta

which

> seem to cause the most problems. I sleep at an angle. I eat slowly

in

> social situation to avoid problems, and actually take as little

food

> as possible to keep up with everyone (even though I really can't)

>

> Does the conditions worsen with time? OR will it be similar to this

> for a while?

[Guest guest]

Hi Pete. My name is and I was diagnosed with achalasia in

October. It seems the disease progresses differently for everyone.

Some it progresses very quickly and some are able to tolerate it for

a longer period of time. This group is a great source of information

so any questions you have ask. Everyone has been very helpful to me.

I've opted for the myotomy, which I'll be having on Feb 18th. How

long have you been having your symptoms? What treatments (if any)

has your doctor recommended for you?

My advice to you is, ask lots questions to your doctor and to the

people in this group. They're the ones with the most experience in

dealing with " A. "

Welcome to the group.

, NYC

> HI Everyone,

> My Name is Pete. I have recently had the esophageal motility, 2

> endoscopies, a barium swallow, and a gastric emptying. My doctor

told

> me I have achalasia. I don't seem to have it as bad as some appear

> to, from what I read.

>

> I can eat most food, but slowly. I sometimes get chest pains when

> eating. I have a nighttime cough, with occasional vomitting. I must

> drink lots of water when I eat or food gets stuck. I lost ten

pound,

> but could use to lose about 10 more so I don't mind that.

>

> I've adapted my eating habits, and avoid beef, bread, and pasta

which

> seem to cause the most problems. I sleep at an angle. I eat slowly

in

> social situation to avoid problems, and actually take as little

food

> as possible to keep up with everyone (even though I really can't)

>

> Does the conditions worsen with time? OR will it be similar to this

> for a while?

[Guest guest]

Welcome Pete!

It sounds like you've got a pretty good handle on your condition so far. As for your question about what will happen over time, there's really no way of knowing. Some people have a very rapid progression from onset of symptoms to progression to the point that *nothing* goes through anymore. Some people have a slow and steady progression of symptoms. In my case, from the first incident of something getting "stuck" to getting to the point where nothing would go down was about 3-4 years.

As for how common it is, it's hard to say for sure, but most docs seem to think it's about 3-4 people in a million who have it. That number may be higher, though, b/c so many of us end up misdiagnosed (GERD, hiatal hernia, "all in your head" etc.)

I am a "somewhat" redhead -- a carrot-top as a child, but in adulthood it has morphed into a red/blonde/brown mix. But we have all different hair colors represented here, and I think just about every continent as well. It doesn't seem to be restricted to any one ethnic group, etc.

Debbi in Michigan

[Guest guest]

Ok, Some asked what the doctor recommends... Well, actually I just

had the Motility test, and he wants to do some calculations on the

data which he got to asbsolutely verify it is achalasia before he

suggest any routes of treatment. During the Gastric emptying study

they relized the food was remaining in my esophagus. This led then to

suspect achalasia. The barium swallow showed uncoordinate peristatic

movement. The endoscopy showed gerd scarring, a swollen LES, and

ulcers, but the ulcers were gone by the second endoscopy.

The condition started about 8 months ago. I had some Gerd but that

went away with Nexium. But immediately afterward, it changed to

waking at night coughing and vomiting. Then I noticed difficult

swallowing. This was very sudden and really has not changed in

severity for the 8 months. Some days are better than others. I seem

to have a harder time eating when under stress or noise. If I eat

slowly and a quiet room then everything is fine. Some days it feels

like I have little problems at all, others I don't even try to eat

much beyond soup or cereal.

My doctor mentioned treatment options and seemed to lean toward

trying calcium channel blockers and betablockers if it turns out to

truly be achalasia, as a first try since they are the least invasive.

I just try to watch what I eat, and how much.

I've seen there are debates as to the true cause of achalasia. I

study large volumes of dat for a living and often find that effects

can be cause by a combination of seperate events occuring in a sample

population. Could achalasia have a multivariate cause? In other

words, could the cause be genetic, and enviromental, and viral

working together? Could I have have a family predisposition that only

certain conditions and a viral attack brought out?

Just a thought...

Pete in Boston.

> Welcome Pete!

>

> It sounds like you've got a pretty good handle on your condition so

far. As for your question about what will happen over time, there's

really no way of knowing. Some people have a very rapid progression

from onset of symptoms to progression to the point that *nothing*

goes through anymore. Some people have a slow and steady progression

of symptoms. In my case, from the first incident of something

getting " stuck " to getting to the point where nothing would go down

was about 3-4 years.

>

> As for how common it is, it's hard to say for sure, but most docs

seem to think it's about 3-4 people in a million who have it. That

number may be higher, though, b/c so many of us end up misdiagnosed

(GERD, hiatal hernia, " all in your head " etc.)

>

> I am a " somewhat " redhead -- a carrot-top as a child, but in

adulthood it has morphed into a red/blonde/brown mix. But we have

all different hair colors represented here, and I think just about

every continent as well. It doesn't seem to be restricted to any one

ethnic group, etc.

>

> Debbi in Michigan

[Guest guest]

Hi Pete,

Everyone seems to progress at a different rate.

I had it for 1 1/2 years before surgery. They

told me they found it very early. As soon as

I started having difficulty and choking a couple

times in my sleep thats all it took for me.

I had the surgery almost one year ago. Feel great!

I think its great you found this sight early on,

I found it after surgery and felt very isolated

throughout my surgery and preparation of surgery.

By the way my hair is blondish brown, never had

red hair or red highlights.

Jenifer in Ohio

> HI Everyone,

> My Name is Pete. I have recently had the esophageal motility, 2

> endoscopies, a barium swallow, and a gastric emptying. My doctor

told

> me I have achalasia. I don't seem to have it as bad as some appear

> to, from what I read.

>

> I can eat most food, but slowly. I sometimes get chest pains when

> eating. I have a nighttime cough, with occasional vomitting. I must

> drink lots of water when I eat or food gets stuck. I lost ten

pound,

> but could use to lose about 10 more so I don't mind that.

>

> I've adapted my eating habits, and avoid beef, bread, and pasta

which

> seem to cause the most problems. I sleep at an angle. I eat slowly

in

> social situation to avoid problems, and actually take as little

food

> as possible to keep up with everyone (even though I really can't)

>

> Does the conditions worsen with time? OR will it be similar to this

> for a while?

[Guest guest]

Well although I can't quite see how the color of our hair has

anything to do with this, I commend you for asking questions - God

knows I am chief! :-) I happen to have auburn hair....

Maybe we are hot blooded Irishmen with a temper! Ha! Ok, I'm joking

this time so calm down....

D

> > HI Everyone,

> > My Name is Pete. I have recently had the esophageal motility, 2

> > endoscopies, a barium swallow, and a gastric emptying. My doctor

> told

> > me I have achalasia. I don't seem to have it as bad as some

appear

> > to, from what I read.

> >

> > I can eat most food, but slowly. I sometimes get chest pains

when

> > eating. I have a nighttime cough, with occasional vomitting. I

must

> > drink lots of water when I eat or food gets stuck. I lost ten

> pound,

> > but could use to lose about 10 more so I don't mind that.

> >

> > I've adapted my eating habits, and avoid beef, bread, and pasta

> which

> > seem to cause the most problems. I sleep at an angle. I eat

slowly

> in

> > social situation to avoid problems, and actually take as little

> food

> > as possible to keep up with everyone (even though I really can't)

> >

> > Does the conditions worsen with time? OR will it be similar to

this

> > for a while?

[Guest guest]

>Maybe we are hot blooded Irishmen with a temper! Ha! Ok, I'm joking

>this time so calm down....

:-)

Multiple sclerosis is more prevalent in families of ish descent

than any other I believe so it's not entirely impossible that red hair

could be a factor ;-) I've not yet met any Irish people with red hair

though (she says, thinking hard) :-) And then correcting herself

because one man of my acquaintance might be described as verging on

strawberry blond but he's middle-aged and greying so it's difficult to

know where exactly he started from ;-) Crumbs, should try to find a

photo of him to check!

--

Sue

Mum to Stephi, 7yo

Nottingham UK

[Guest guest]

Sue Woollett wrote:

>Multiple sclerosis is more prevalent in families of ish descent

>than any other I believe so it's not entirely impossible that red hair

>could be a factor ;-)

The genetics of MS has been studied a lot, all over the world, and it seems

to have a very complex genetic bases that seems to vary with ethnic groups

and even region. It could be that red hair would correlate in one MS group

and not in another MS group. I have not looked into this red hair link.

> I've not yet met any Irish people with red hair

>though (she says, thinking hard) :-)

You know Scotland means " Land of the Irish. " See:

http://www.rte.ie/tv/ancientireland/prog1d.html

This Irish tan-gent has auburn hair, which is only a little reddish.

notan

[Guest guest]

>The genetics of MS has been studied a lot, all over the world, and it seems

>to have a very complex genetic bases that seems to vary with ethnic groups

>and even region.

And increases in incidence the further away from the equator you go.

I found this:

http://www.jr2.ox.ac.uk/bandolier/booth/neurol/MSgeog.html

which wasn't the link I wanted to post but I have to go to work shortly

so haven't too much time to spend - it's pretty OT anyway :-)

>> I've not yet met any Irish people with red hair

>>though (she says, thinking hard) :-)

>

>You know Scotland means " Land of the Irish. " See:

>http://www.rte.ie/tv/ancientireland/prog1d.html

Scots I can do better - I definitely have a ish friend with red in

her hair. :-)

--

Sue

[Guest guest]

Pete wrote:

The endoscopy showed gerd scarring, a swollen LES, and ulcers, but the ulcers were gone by the second endoscopy.

Pete, did they do a biopsy on the swollen/scarred area? Barrett's esophagus mimics the symptoms of achalasia. It's the result of damage from GERD, and it's a precancerous condition. We had a member here who mistakenly was diagnosed w/ achalasia and it turned out he had esophageal cancer instead (they didn't find it for a while.) He had all the symptoms we did, and I was shocked and saddened when his diagnosis changed.

I don't want to scare you or anything, and I'm not saying that you have this other condition -- I just want to make sure you're aware of it so you can make sure your doctor covers all the bases. The scarring and swollen LES kind of set alarm bells going off when I read them, as that's not typical for achalasia patients.

My doctor mentioned treatment options and seemed to lean toward trying calcium channel blockers and betablockers if it turns out to truly be achalasia, as a first try since they are the least invasive.

It's worth a try - like most things, it works better for some than for others. I have low blood pressure and CCB's weren't an option for me for long-term treatment (that rebound headache was horrendous!) But it was great when I wanted to go out to eat w/ friends and I could actually EAT the food! (I just made sure I could go home right afterwards to sleep off the headache.)

I've seen there are debates as to the true cause of achalasia. I study large volumes of dat for a living and often find that effects can be cause by a combination of seperate events occuring in a sample population. Could achalasia have a multivariate cause? In other words, could the cause be genetic, and enviromental, and viral working together? Could I have have a family predisposition that only certain conditions and a viral attack brought out?

This is a point that some of us were trying to make a week or so ago, too.... As much as I would love to say "this only happens to people who have <insert condition>", I really doubt that there's one singular cause for achalasia, which makes it soooooo hard to find out what combinations ARE involved. And unfortunately, it doesn't appear to me that many/any researchers are even TRYING to find a cause; they're all concentrating on how to treat it after it happens. I wish someone would create an extensive database of in-depth history for ALL achalasia patients -- genetic information, cultural/ethnic information, geographical information, medical history, environmental exposures, etc.

Debbi in Michigan

[Guest guest]

Debbi,

I did have a biopsy and they found nothing. I just had the manometry

test, and will talk to the doctor about it on Monday. I will ask him

again if there is a possibility of other conditions.

I will try to find out a little about Barrett's esophagus, Thanks for

the heads up.

>

> The endoscopy showed gerd scarring, a swollen LES, and ulcers, but

the ulcers were gone by the second endoscopy.

>

> Pete, did they do a biopsy on the swollen/scarred area? Barrett's

esophagus mimics the symptoms of achalasia. It's the result of

damage from GERD, and it's a precancerous condition. We had a member

here who mistakenly was diagnosed w/ achalasia and it turned out he

had esophageal cancer instead (they didn't find it for a while.) He

had all the symptoms we did, and I was shocked and saddened when his

diagnosis changed.

>

> I don't want to scare you or anything, and I'm not saying that you

have this other condition -- I just want to make sure you're aware of

it so you can make sure your doctor covers all the bases. The

scarring and swollen LES kind of set alarm bells going off when I

read them, as that's not typical for achalasia patients.

>

> My doctor mentioned treatment options and seemed to lean toward

trying calcium channel blockers and betablockers if it turns out to

truly be achalasia, as a first try since they are the least invasive.

>

> It's worth a try - like most things, it works better for some than

for others. I have low blood pressure and CCB's weren't an option

for me for long-term treatment (that rebound headache was

horrendous!) But it was great when I wanted to go out to eat w/

friends and I could actually EAT the food! (I just made sure I could

go home right afterwards to sleep off the headache.)

>

> I've seen there are debates as to the true cause of achalasia. I

study large volumes of dat for a living and often find that effects

can be cause by a combination of seperate events occuring in a sample

population. Could achalasia have a multivariate cause? In other

words, could the cause be genetic, and enviromental, and viral

working together? Could I have have a family predisposition that only

certain conditions and a viral attack brought out?

>

> This is a point that some of us were trying to make a week or so

ago, too.... As much as I would love to say " this only happens to

people who have <insert condition> " , I really doubt that there's one

singular cause for achalasia, which makes it soooooo hard to find out

what combinations ARE involved. And unfortunately, it doesn't appear

to me that many/any researchers are even TRYING to find a cause;

they're all concentrating on how to treat it after it happens. I

wish someone would create an extensive database of in-depth history

for ALL achalasia patients -- genetic information, cultural/ethnic

information, geographical information, medical history, environmental

exposures, etc.

>

> Debbi in Michigan

[Guest guest]

Sue Woollett wrote:

>And increases in incidence the further away from the equator you go.

>

>I found this:

>

>http://www.jr2.ox.ac.uk/bandolier/booth/neurol/MSgeog.html

Interesting.

notan

[Guest guest]

Pete wrote:

>... Could achalasia have a multivariate cause? In other

>words, could the cause be genetic, and enviromental, and viral

>working together? Could I have have a family predisposition that only

>certain conditions and a viral attack brought out?

I think so. And in the case of family predisposition, the predisposition

could be so weak that it would be unlikely your children would get it.

notan

[Guest guest]

Debbi,I did have a biopsy and they found nothing.

That part's good!

I just had the manometry test, and will talk to the doctor about it on Monday. I will ask him again if there is a possibility of other conditions. I will try to find out a little about Barrett's esophagus,

A simple search on the phrase should give you hundreds of hits -- it's a pretty well-known condition.

Thanks for the heads up.

You're very welcome. Again, I hope it wasn't upsetting for you to hear that -- It wasn't my intention to scare you or imply that that's what you had or anything. I just like to give everyone as much info as possible, just in case their doctor didn't. My first specialist didn't give me all the pertinent information, and it affected the treatment I was given, and I hate to see that happen to other people. From what I understand, Barrett's is extremely treatable if they catch it early; that's why it's so important to know about it as a possibility.

Good luck on Monday -- please give us an update after you talk to your doctor.

Deb