Newly diagnosed

[Guest guest]

It takes a bit more than just 2 trips to the

physiotherapist before you start seeing improvements. When I went

to the PT I was told to go for at least 6 weeks and

it was at least 2 weeks before I felt any relief.

But it changes from person to person I guess. I hope

you get off those crutches soon

[Guest guest]

it takes a bit more time for pt to show

improvement, especially after a patellar dislocation after

which it takes the knee a long time to fully recover

(mine took several months).<br>BUT<br>walking on

crunches 2 months after a patella dislocaiton is something

to worry about. did you recieve a brace? can you

fully extend and flex your knee? <br><br>-sigal

[Guest guest]

I have limited ROM about 80 degrees last week. My

PT says to take it easy and do my ROM excersises

along with the quad strenghening excersises and don't

pust it too hard or fast. That is the worst part, I am

a senior in high school and want to regain the

" human race " sometime before prom. I have tried to be

patient with my OS but everytime I go for a visit the

diagnosis changes. Last time he said that my knee was

getting better and I would be fine. Now he is saying that

if PT doesn't work I will be going through surgery

(not something I want!). But at this point I would do

anything to lessen the pain. <br>Later and thanks for the

advise!

[Guest guest]

Dear ,

Your symptoms sound similar to mine. My doctor told me that usually

when you have more severe symptoms, such as unable to get any food

down or water, that usually your esophagus isn't as stretched out as

others. That is good and bad. I couldn't get anything down the last

couple of months before I had a dilation and was losing 1/2 to 3/4 of

a pound a day. The good news is that it seems like the dilation and

surgery are more effective if you aren't as stretched out.

Most of your questions have been asked before and reading through the

old posts may be helpful to you. I would suggest the advice of

doctors who are familiar with achalasia is more valuable than from a

doctor who is not familiar. I opted for the dilation first because

it is easier to recover, less invasive and has a chance of working

for years. I have little kids and didn't want to be laid up for a

long time, generally from the boards here there is discussion that

dilations can cause scar tissue, making surgery more difficult

later. Not many people seem to get much satisfaction from botox it

seems. Those are just my impressions from the board. As for food, I

found warm, not cold water more beneficial and also thick drinks,

like food supplement drinks went down better that thin things. For

some reason candy bars and cookies were easy to eat. I also for a

couple of weeks had some luck with the nutrition bars, similar to a

cookie in texture. Fruits were a no no and still some trouble. I

too kept thinking I could live with it as some days were better than

others. It quickly, within a couple of months time, got so I

couldn't swallow saliva, was sleeping on 6 pillows, aspirating

sometimes into my lungs. There is a big danger when you start

aspirating, the beginning sign is coughing at night. From what I

gather here the worst thing you can do is totally ignore the problem,

as your esophagus stretches out from holding the food, the more

trouble you have correcting the problem. Good luck to you and you

should find the old posts helpful. As for doctors, I'm in California

and went to UCLA so not much help there. Go to the one that knows

the most. It is really a speciality and unless they have experience

with achalasia I wouldn't take a doctor's advice. As for difference

in days, it does seem to be somewhat stress related. Others on the

board have jumped up and down and lifted their arms, I didn't find

that very helpful, but it is a long struggle trying to find food that

will go down. For some reason I could eat tortilla chips also.

Bread was never and still very difficult.

Sandy

> Hi my name is and am 24 years old. I was just diagnosed

with

> achalasia. I started to get these symptoms in 1999. But I would

have

> a good day as in No difficulty swallowing. Then I would have a

month

> of bad days. Then it would go away for awhile and then come back.

> It has now gotten worse where I finally went to see someone. I

have

> started the regurgitate and have chest and back pain. Unfortunately

> my Dr knows really nothing of this. He isn't even up to date on

> treatments. He is sending me to Umass Memorial Hospital for

another

> opinion on treatments. He told me not to go with the surgery. I

> don't want the Biotox injection. Is there anyone who has had the

> treatments and can give me pros and cons of each one. Maybe some

> questions to ask the Dr's in Worcester.

> Also, I have been requrgitating my food and water alot lately.

Is

> there any tips to help me get through this until I can get some

> medical help? It makes me scared when I have to purge up to 4times

a

> day. I get confused too, why is it that one day I can only have

> swallowing difficulty but not purge and the next I can't stop

> purging? Any answers to these questions would be greatly

appreciated.

>

[Guest guest]

Hi . I was also in my 20's when I was diagnosed with Achalasia and like you, I was given the same options. At that time my doctor told me it would be best for me to have the balloon dilatation first to see how that went and then if necessary he wanted me to have the surgery done. The effects of the dilation were very short lived and as I lost more weight and began to get down even less food I was scheduled for the surgery. As for the Botox, my surgeon (who is well known and respected in this field) said that he would only consider Botox if I were a much older woman and not someone in their 20's. He looked at the Botox as very effective but too risky because we just don't know enough yet about it's long term effects. Hopefully I didn't just add to your confusion here. I wish you the best of luck. And we're here for you.

le :-)

nicole5596 <@...> wrote: Hi my name is and am 24 years old. I was just diagnosed with achalasia. I started to get these symptoms in 1999. But I would have a good day as in No difficulty swallowing. Then I would have a month of bad days. Then it would go away for awhile and then come back. It has now gotten worse where I finally went to see someone. I have started the regurgitate and have chest and back pain. Unfortunately my Dr knows really nothing of this. He isn't even up to date on treatments. He is sending me to Umass Memorial Hospital for another opinion on treatments. He told me not to go with the surgery. I don't want the Biotox injection. Is there anyone who has had the treatments and can give me pros and cons of each one. Maybe some questions to ask the Dr's in Worcester. Also, I have been requrgitating my food and water alot lately. Is there any tips to help me get through this until I can get some medical help? It makes me scared when I have to purge up to 4times a day. I get confused too, why is it that one day I can only have swallowing difficulty but not purge and the next I can't stop purging? Any answers to these questions would be greatly appreciated.

[Guest guest]

,

I've was diagnosed when I was 16 and had similar symptoms. I had a

balloon dilation and that lasted until I was 24, last March. My doctor

suggested I get a botox shot because I was so afraid to be cut open and he

actually thought that the stress of dealing with actual surgery would would

me worse. I just had an upper GI a month ago and so far, (fingers crossed),

I am still okay. My prayers are with you with whatever you decide to do. I

don't post much on this board but I read almost all the threads. There are

lots of people out there with achalasia and that alone gives me alot of

comfort. I guess eating smaller and more frequent meals are helpful too. I

understand how frustrating it can be because you are young. Good luck to

you and god bless.....

Kai Yu

>From: " nicole5596 " <@...>

>Reply-achalasia

>achalasia

>Subject: Newly Diagnosed

>Date: Sun, 09 Jun 2002 21:11:23 -0000

>

>Hi my name is and am 24 years old. I was just diagnosed with

>achalasia. I started to get these symptoms in 1999. But I would have

>a good day as in No difficulty swallowing. Then I would have a month

>of bad days. Then it would go away for awhile and then come back.

>It has now gotten worse where I finally went to see someone. I have

>started the regurgitate and have chest and back pain. Unfortunately

>my Dr knows really nothing of this. He isn't even up to date on

>treatments. He is sending me to Umass Memorial Hospital for another

>opinion on treatments. He told me not to go with the surgery. I

>don't want the Biotox injection. Is there anyone who has had the

>treatments and can give me pros and cons of each one. Maybe some

>questions to ask the Dr's in Worcester.

> Also, I have been requrgitating my food and water alot lately. Is

>there any tips to help me get through this until I can get some

>medical help? It makes me scared when I have to purge up to 4times a

>day. I get confused too, why is it that one day I can only have

>swallowing difficulty but not purge and the next I can't stop

>purging? Any answers to these questions would be greatly appreciated.

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi Annie,

Welcome to the group, you will find a lot of help and support here. Even

if you knew or had suspicions about ASD it is still hard to get the official

diagnosis. But it sounds like he is doing very well. Finding rewards can be

difficult, but we learned to use music, since Brook loves music and computer

time, that's another favorite, and at school they also let him watch 5

minutes of a video as a reward. So think about what he really enjoys and try

to use that, sometimes you have to be creative. Brook is nonverbal also, he

has a few words, but he does have higher receptive language. He mostly

understands things to do with his activities and needs. He is loving most of

the time and has plenty of odd behaviors too.

We had him diagnosed last December and have been trying medication to

help him focus and lessen some of his obsessions or behaviors with some

success. We can all relate to " just isn't like 'other " kids with DS. " Tell

us more about yourself and Mikey and what he likes to do.

Marisa

Mom to Miles 15, Brook 12 and Genevieve 5

[Guest guest]

In a message dated 10/4/02 6:43:19 AM Pacific Daylight Time, jamz710@...

writes:

<< He is doing pretty good though,he does talk.Not much but has words.He

does ALOT of echoing. He has never regressed which makes me wonder

about this DX and he is also very loving. But he just isn't

like " other " kids with DS. Well I hope to get to know you all.

Annie >>

Hi Annie,

Nice to have you with us. Looking forward to hearing more about Mickey and

your family. Sounds like my little guy, Seth. Well, other than the echoing.

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 10 the gymnast, 11 the

pianist, 25 beautiful but a pain, Jen 26 the wallet breaker, Grandma to

Errick 6 ALL boy and wife to , my hero.

[Guest guest]

welcome !

I have only been with the group for about 2 months but let me tell you i do

not know how i survived without this support group. They are a bunch of

wonderful people who really care.

Take care

holly

[Guest guest]

Dear ,

Welcome to the group -- though I'm sorry you had to meet us the hard way --

by getting Stills! It sounds like you had a rough start with this. I also

had a pretty quick onset. It started a year ago and just got a Stills

diagnosis a couple of months ago. Prednisone can make a bit crazy as far as

I'm concerned! Though I'd be happy to get you some real medical information

if you'd like. (I'm only on 10 mg/day and it is causing a bunch of problems

for me.)

I don't know anything about the other medication you're on, so I don't know

how it effects people.

in the meantime, please feel free to write the group anytime for

support...that's why we're here! I also think it is great that you have such

a loving supportive family. I know it makes such a difference!

Be well,

[Guest guest]

greetings robert...and fellow canuck....

welcome to the best... site , and mailing listthis side of pluto.....there

are a few members here in canada, but very little information on aosd. i am

very impressed that you were dx as quickly as you were, although we have

seen a giant leap in speedier diagnoses in the last couple of years, many of

we oldtimers spent many years attempting to deal with the unknown.....you

have found a great many knowledgable and supportive *STILLIGANS* if there is

something you have a question about just drop us a line, if you need a laugh

we will likely manage to provide the best of medicines..laughter, and love,

support and understanding.....hey what more can one ask for.....hmmm now

that i think about it ....there's likely a great deal we could ask for...but

getting the asked for...? lol

so welcome, robert

regards

cat

-- newly diagnosed

My name is Docken,born raised still live in Edmonton Alberta.I am 30

years old born on may,6,1972.Was diagnosed with stills on oct,2,2002.I luv

to golf,bowl,computers,poker.I have luving family mother,father,2 sisters,2

nephews,many aunts and uncles.Think my symtoms started bout 7 weeks before i

had pain in chest locallized to center seems like.When i sneezed,coughed

laughed it was very painful.Seen doctor took exray found nothing sent home

where seemed to go away.The next week at work my left knee was locking which

i felt was weird.Finished out work week,thought [im a cement finisher

Saturday morn woke up stiff still went golfin anyhow.After nine holes i

could barely walk,madit home took roxasol went bed.woke up same thing so

sore all joints stiff.Went hospital where they course found nothing told me

to find family doctor.He prescribed penicillin sent home week later he gave

me dif antibitotic not sure what still no relief.Finally my parents god

bless them told me thats it youre comin here .That night had first sweat and

parents took me to local small hospital where doctor found sum sac filled

fluid around heart .Was sent to City hospital spent week of tests was told

had mono.Sent home ended back week later much worse pain so bad headaches

from hell.After bout 3 weeks rhuematolgist came in this is after numerous

tests asked few qestions seen rash and said he suspected AOSD right away he

only sees 1 case every ten years.Was still few tests they wanted to run

which took 1 more week to do.Was evenually put on 60 mgs of prednisone and

didrocal .Right away next day i started feeling much better.Today my joints

are still dont wanna work quite right and my breathing gets fast sumtimes

but ive been for walks seem to be gettin better daily hope it continues

Anyone out there have good early results as im having on prednisone find it

does make you moody i cry and i dont know why goes away as fast as it cums

but still its better than being bedridden.Whatever future brings i hope im

ready sounds like this very bad thing we all have here.Good luck to all u

out there ill fight the good fight as hope all u do.

[Guest guest]

Thnx for encouragement bro wht part of Canada u from?Im hopin that catchin it

early helps me.How long have u had tha disease and hav u ever felt good since u

had it.They told me my liver is still bad and they havto watch it im tryin to

get as much exersise as possible since i can walk and its not painful but i get

winded very easily and havto find place to sit for while.take care bro talk to

ya soon. newly diagnosed

My name is Docken,born raised still live in Edmonton Alberta.I am 30

years old born on may,6,1972.Was diagnosed with stills on oct,2,2002.I luv

to golf,bowl,computers,poker.I have luving family mother,father,2 sisters,2

nephews,many aunts and uncles.Think my symtoms started bout 7 weeks before i

had pain in chest locallized to center seems like.When i sneezed,coughed

laughed it was very painful.Seen doctor took exray found nothing sent home

where seemed to go away.The next week at work my left knee was locking which

i felt was weird.Finished out work week,thought [im a cement finisher

Saturday morn woke up stiff still went golfin anyhow.After nine holes i

could barely walk,madit home took roxasol went bed.woke up same thing so

sore all joints stiff.Went hospital where they course found nothing told me

to find family doctor.He prescribed penicillin sent home week later he gave

me dif antibitotic not sure what still no relief.Finally my parents god

bless them told me thats it youre comin here .That night had first sweat and

parents took me to local small hospital where doctor found sum sac filled

fluid around heart .Was sent to City hospital spent week of tests was told

had mono.Sent home ended back week later much worse pain so bad headaches

from hell.After bout 3 weeks rhuematolgist came in this is after numerous

tests asked few qestions seen rash and said he suspected AOSD right away he

only sees 1 case every ten years.Was still few tests they wanted to run

which took 1 more week to do.Was evenually put on 60 mgs of prednisone and

didrocal .Right away next day i started feeling much better.Today my joints

are still dont wanna work quite right and my breathing gets fast sumtimes

but ive been for walks seem to be gettin better daily hope it continues

Anyone out there have good early results as im having on prednisone find it

does make you moody i cry and i dont know why goes away as fast as it cums

but still its better than being bedridden.Whatever future brings i hope im

ready sounds like this very bad thing we all have here.Good luck to all u

out there ill fight the good fight as hope all u do.

[Guest guest]

thnx i cant wait to go into youre chat rooms think i have much to learn ive

takin my life too fast learning to slow down is different for me dont know if

ill ever do my labour intensive job ever again but well see im sick of being at

home lol i like to work.

Re: newly diagnosed

welcome !

I have only been with the group for about 2 months but let me tell you i do

not know how i survived without this support group. They are a bunch of

wonderful people who really care.

Take care

holly

[Guest guest]

Hi ,

Hello & welcome to our little " family " . My name is and I have had stills

since 1997. Here, you will find many great and supportive people. I can fully

understand the concern you have regarding work.....once upon a time ago I was a

workaholic and couldn't stand being at home all the time. Since having this

bear of a condition, I have been forced to " stop and smell the roses " , so to

speak, and have actually come to enjoy being home. It gives me the ability to

save my energy for my 2 boys.

I'm glad that you managed to get a diagnosis so quickly. Not too many of us are

able to get an answer that quickly. Prednisone is a horrid drug, but

unfortunately it is one of the necessary evils (at least if we want to walk).

Feel free to ask anything.....someone here will always be able to answer......

Take care,

Chris

greywolf70@...

[Guest guest]

ey chris thnx was wondering if u thnk i should push my exersise i do get winded

fast but can sit down and go further i seem to have little pain been told my

liver is still bad but all my other bad blood tests were down i know little bout

this hope my doctors do prednisone im finding out is affecting me so far more

emotoinally than anything so far acually slept 7 hours last night woohoo.Take

care bro .

Sent: Tuesday, October 15, 2002 7:48 PM

Subject: Re: newly diagnosed

Hi ,

Hello & welcome to our little " family " . My name is and I have had

stills since 1997. Here, you will find many great and supportive people. I can

fully understand the concern you have regarding work.....once upon a time ago I

was a workaholic and couldn't stand being at home all the time. Since having

this bear of a condition, I have been forced to " stop and smell the roses " , so

to speak, and have actually come to enjoy being home. It gives me the ability

to save my energy for my 2 boys.

I'm glad that you managed to get a diagnosis so quickly. Not too many of us

are able to get an answer that quickly. Prednisone is a horrid drug, but

unfortunately it is one of the necessary evils (at least if we want to walk).

Feel free to ask anything.....someone here will always be able to answer......

Take care,

Chris

greywolf70@...

[Guest guest]

ey chris thnx was wondering if u thnk i should push my exersise i do get winded

fast but can sit down and go further i seem to have little pain been told my

liver is still bad but all my other bad blood tests were down i know little bout

this hope my doctors do prednisone im finding out is affecting me so far more

emotoinally than anything so far acually slept 7 hours last night woohoo.Take

care bro .

Sent: Tuesday, October 15, 2002 7:48 PM

Subject: Re: newly diagnosed

Hi ,

Hello & welcome to our little " family " . My name is and I have had

stills since 1997. Here, you will find many great and supportive people. I can

fully understand the concern you have regarding work.....once upon a time ago I

was a workaholic and couldn't stand being at home all the time. Since having

this bear of a condition, I have been forced to " stop and smell the roses " , so

to speak, and have actually come to enjoy being home. It gives me the ability

to save my energy for my 2 boys.

I'm glad that you managed to get a diagnosis so quickly. Not too many of us

are able to get an answer that quickly. Prednisone is a horrid drug, but

unfortunately it is one of the necessary evils (at least if we want to walk).

Feel free to ask anything.....someone here will always be able to answer......

Take care,

Chris

greywolf70@...

[Guest guest]

My specialist told me that you can have achalasia and still have normal

muscle functions, I have no muscle contraction in my E and even if a

dilation or some other method is successful my food will only travel to my

stomach thru gravity taking it down not the muscles pushing it down. Someone

in this group recently said we are all very differnt but all very similar

and I think that is so true

Meaghan

newly diagnosed

I've been suffering from typical syptoms of achalasia for over a

year now. The Dr. suspected Achalasia a few months ago, bot the

manometry indicated normal muscle functioning. I have been referred to

USC and the Dr. there is almost positive I have achalasia, but wants

to do all the testing again. I am soooo not excited. Has anyone else

had normal muscle functioning in their initial manometry? As the first

Dr. thinks, Atypical Achal

[Guest guest]

Hi Patti, I'm from Staen Island. I wa diagnosd about 37 years ago and have had 2 myotomy's. I am treated by Dr. Miskovitz, a gastroenterologist at New York Hosptital who is excellent. I've had several dilations prior to my surgeries and without complications so don't worry. It's pretty common for achalasia. Are you having pneumatic or just a weighted tube? Hopefully that's all you will need. You can ask your doctor about botox injections. They work for some peopke who are treated early. Good luck.

in Stated Island

casermi@...

[Guest guest]

Hi Patti!

I've had two Pneumatic Dilations, and no complications. The complication (rupture) rate seems to be dependent upon the experience of the GI doc performing the dilation, so check and see how many s/he's done and what their rate of rupture is.

Also, as someone who has learned a LOT from this board this year, I would do things differently if I had known then what I know now. Dilation and Botox can both cause scarring and make it more difficult to have surgery later on. If I had just developed achalasia today (I've had symptoms for 10 yrs) and learned what I now know, I would just go straight to the most experienced surgeon I could find and get the surgery (heller myotomy) performed laparoscopically. Now, since I've had two dilations and one botox injection, I may not be eligible to have the surgery done laparoscopically, which means insteady they may have to open me all the way up, spread the ribs, etc.

I'm trying to get an appt at The Cleveland Clinic right now -- I've heard wonderful things about them here on this board!Debbi in Michigan

Newly diagnosed

Hi! My name is Patti and I live in the New York Metropolitan area, I was recently diagnosed with achalasia (two weeks ago) but have been suffering with symptoms for about two years. I have been reading the recent postings on this site and have become much better informed already. I am having an endoscopy and manomety study done this Friday at New York Presbyterian Hospital.. They are putting the tube for the manometry in while I'm alseep since the last attempt to get it in while I was awake was not successful(after many, many attempts). The doctor is talking about a dilitaion in the near future but I'm nervous about a rupture of the esophagus requiring major surgery. I can still eat sometimes but this disease is rapidly changing my life. Thanks for all the info available here!!

[Guest guest]

I'd say " positive chondromalacia " is probably chondromalacia of the patella --

I don't know of any other kind. If you sleep such that the kneecap is pushed

over laterally during the night, it could cause pain at the CP site and refer it

to various places, including down your shin.

My guess on the blood tests is he's testing for rheumatoid arthritis, just to

eliminate it.

In my book CP is not the same as arthritis, it's an injury cause by rubbing the

patella against the femur. Arthritis (osteo) is a condition of unknown origin

where the deterioration of the bone is caused by causes other than (or in

addition to) friction. I COULD be wrong, here. I'm not a doc. I think if you

can stop the contact between the patella and the femur, the chondromalacia

doesn't go on progressing, whereas arthritis does. But like I said, I could be

wrong about that. (And if your doc says it does, he could be too -- they're not

all right.)

Ann

I have had sharp pain in my right shin, and it only occurs early in

the morning, which wakes me up. On a scale of 1 - 10, I would say the

pain is a 6.

I was diagnosed with positive Chondromalacia in the right knee. Is

this the same as Chondromalacia Patella? Sorry, but I am alittle lost

here.

My doc told me to take two Tylenol Arthritis pills just before

bedtime, and last night it was better, but I still had the pain. He

said if it is not better in two weeks, to come back for a blood test.

What would the blood test tell us?

Also, is this the same as arthritis?

Many thanks in advance.

Kate

[Guest guest]

You are correct that osteoarthritis is frequently a condition of

unknown origin. However, that's just one kind of arthritis. Arthritis

in general includes deterioration of the cartilage for ANY reason.

Whether it progresses or not is irrelevant. So basically, everyone

here has arthritis. So it's correct to say you have arthritis however

it's not a very useful statement since the term arthritis is so

encompassing.

As for Tylenol Arthritis, the FAQ specifically says it is a pain

reliever, not an anti-inflammatory. If it wasn't sufficient, then you

need something stronger or perhaps you really do need an

anti-inflammatory or a dozen other things (rehab, new knee, etc, sigh).

Don

On Sunday, November 30, 2003, at 04:55 PM, ruby2zdy wrote:

> I'd say " positive chondromalacia " is probably chondromalacia of the

> patella -- I don't know of any other kind. If you sleep such that

> the kneecap is pushed over laterally during the night, it could cause

> pain at the CP site and refer it to various places, including down

> your shin.

>

> My guess on the blood tests is he's testing for rheumatoid arthritis,

> just to eliminate it.

>

> In my book CP is not the same as arthritis, it's an injury cause by

> rubbing the patella against the femur. Arthritis (osteo) is a

> condition of unknown origin where the deterioration of the bone is

> caused by causes other than (or in addition to) friction. I COULD be

> wrong, here. I'm not a doc. I think if you can stop the contact

> between the patella and the femur, the chondromalacia doesn't go on

> progressing, whereas arthritis does. But like I said, I could be

> wrong about that. (And if your doc says it does, he could be too --

> they're not all right.)

>

> Ann

>

>

> I have had sharp pain in my right shin, and it only occurs early in

> the morning, which wakes me up. On a scale of 1 - 10, I would say

> the

> pain is a 6.

>

> I was diagnosed with positive Chondromalacia in the right knee. Is

> this the same as Chondromalacia Patella? Sorry, but I am alittle

> lost

> here.

>

> My doc told me to take two Tylenol Arthritis pills just before

> bedtime, and last night it was better, but I still had the pain. He

> said if it is not better in two weeks, to come back for a blood test.

> What would the blood test tell us?

>

> Also, is this the same as arthritis?

>

> Many thanks in advance.

>

> Kate

>

>

>

>

[Guest guest]

The symptoms are similar but vary greatly from person to person. Same with the tests and the treatments.

There are several excellent articles that are listed in the "links" section (you can find the Links section on the left-hand screen of any page of the website.) I recommend you read those for more in-depth information.

In general, the tests are:--Barium Swallow (x-rays taken while drinking a barium liquid)

--Endoscopy (camera tube put down the throat for visual inspection of the esophagus and surrounding areas)

--Manometry (small tube put down the throat [via nose or mouth] for measuring the strength and pattern of esophageal contractions in relation to swallowing)

(stretching with a balloon is NOT a test, it is a treatment)

In general, the treatments are:

--Botox Injection (injection of botulinum toxin into the muscle of the LES inside the esophagus to relax the muscle -- if it works, it's only temporary. doesn't work for everyone, though.)

--Balloon Dilatation/Dilation (balloon used inside the esophagus to stretch/rip the LES to relax the muscle -- if it works, it is likely to only be temporary [at least I've yet to find someone who had one dilation and never needed another treatment again for the rest of their lives]. doesn't work for everyone, though.)

--Heller Myotomy (surgical procedure to cut the LES muscle on the outside of the esophagus to relax the muscle. seems to be permanent for some, but not permanent for others. doesn't work for everyone, although it is generally considered successful in 90-95% of patients.)

--Medication (calcium channel blockers can sometimes relax the LES muscle; various drugs can sometimes relieve the "spasm pains" that many patients experience. most drugs have side effects that prevent this from being a long-term treatment, and the drugs don't work for everyone.)

--various "alternative" treatments.... changes in diet, nutritional supplements, herbs, accupuncture/accupressure, etc., have been used with varying degrees of success and not much (if any) documentation of their effectiveness besides anecdotal accountings.

There are lists in the Database section of foods to try or foods to avoid, etc. For me, dense (heavy) semi-liquid foods work best. Creamy soups, oatmeal, cream of wheat, etc., seem to "sink" rather than float up in my esophagus. Anything that is lightweight is more likely to cause me problems: rice, bread, pasta. Warmth also seems to help relax the LES muscle (others do better with cold.) I have to avoid carbonation, while others find it helps. It's really a trial-and-error kind of thing.

My best advice is to read EVERYTHING you can get your hands on, and find an EXPERIENCED physician who has treated several other achalasia patients before. Many of us travel several hours to see doctors in a different region, just to be able to find someone familiar with the disease and the various treatments. After reading the links on this site, I suggest finding a good doctor and discussing what you've read, combined with the doctor's experience in dealing with this disease.

Hope this helps!Debbi in Michigan

hi, just was told I have achalasia. Is there any advise you can give me? I need to know what works, is there foods to aviod, certain ways to eat or what I am at a loss. I do not know what to do. Is there any other tests except the endoscope and streching with the ballon.

[Guest guest]

Welcome Ray,

You will recieve a lot of great information here, as I have.

As was mentioned before everyone experiences this differently and at

different paces. Mine has progressed in the last couple of months, I

lost 25 lbs. in a month. But right now, I am really paying attention

to what goes down and what doesn't. Before, I was able to eat just

about anything as long as I had water. Now, I have given up quite a

bit of stuff. Even so, I am seeking treatment, I do not want it to

get any worse.

The spasms are called Non Cardiac Chest Pains (nccp). It occurs

anytime, anywhere for no apparent reason, and they are painful. The

LES muscle spasms, I have had these pains for about 3 years now. You

are very lucky you do not suffer with these.

Just make sure you ask plenty of questions, here and, to your doctor.

You are not going through this alone.

Take care,

Genia

[Guest guest]

I have an 8 year old who is “classic”

aspergers. He has no problems pointing out objects of interest or

initiating conversations. We went through many years of diagnosis before

finally figuring out my child has aspergers. He has always been very

verbal, and test show he has the vocabulary of an 18 year old. I’m

just a mom but I have to disagree that these things “strongly shows signs

that don’t apply”. We have found that many professionals don’t

understand aspergers. These kids can be very bright and can talk your ear

off about all sorts of interesting things.

Mine wasn’t diagnosed until 7, but

many are diagnosed earlier. I knew there was a problem before my husband

did. Others tried to say he was just an active little boy, but time has

shown different. Trust your instinct, you know him better than anyone

else. The earlier the diagnosis the better, it will help you understand

how to help him!

Wish you the best!

From: sleepnotme

[mailto:sleepnotme@...]

Sent: Sunday, January 23, 2005

7:57 AM

Autism and Aspergers Treatment

Subject: newly

diagnosed

Hi group...my 5 yr. old son has just been

diagnosed with Asperger's.

As the dr. put it...he shows many of the signs,

such as the distant

stare, trouble transitioning, obsessive interests,

but also strongly

shows signs that don't apply, such as pointing out

objects of

interest and initiating conversations. I

find this all very

confusing, especially the contradictions! I am

very thankful that he

is described as having " a touch of

autism " (in the way of Asperger's)

but I volunteer in his classroom and it is easy to

see that my son

will be " left behind " as he gets older

because of his need for

perfection and disregarding time frames. My

husband says I am

creating problems where they don't exist, and his

teacher very

reluctantly filled out the questionairre supplied

by the doctor,

saying " he is just showing signs if being a

little boy, the youngest

in the class " . I wish this were true, but I

feel I know him better

than anyone and I am very concerned. He

doesn't have very good

social skills, yes, he says please and thank you

but doesn't

interact with others the same way as kids his

age. His gross motor

skills aren't horrible, although he is below

average...I ramble

on....the Dr. said most ASP kids aren't identified

this early...does

this mean this will worsen? He says get an IEP for

1st grade, mainly

to insure he will have a lunch and playground

buddy, and be prompted

along with his work...he is fine with the subject

matter....just

slow with writing and coloring etc. We lovingly

call him The Putz

King and always thought his interest in drains,

sprinkler

systems,smoke detectors etc. was cute. Can

anyone relate??? Any

comments, advice, opinions will be appreciated.

[Guest guest]

Yes, I can definately relate. I was in the same spot as you 3-4

years ago. My son doesn't show every sign of Asperger's, and that

was kind of disturbing when he was first diagnosed - I kept wondering

if it were really an accurate diagnosis, kept thinking to myself that

it really couldn't be true, even thought I knew in my heart it was.

The more I got to know other kids with HFA/AS the more I realized

that the different aspects of Asperger's are almost like a bink of

dimmer switches in each kid, and each kid's switches are set on

various levels. Very few of the kids I know are exactly alike - and

yet they aren't exactly different either. It occurred to me I should

be thrilled my ds doesn't have every sign of AS!! We have enough to

work on without having to work on every single diagnostic criteria!!

My son is in an all AS class and the fact that every kid isn't

working on exactly the same issue is wonderful - they can be models

for each other.

It sounds like you have good instincts about your son, and that will

really help you a lot.

Time helps ease the shock of the diagnosis, but so does knowledge and

getting to know other families going through similar situations. You

will be amazed how quickly kids begin to develop once they are in

therapies and you begin working with them at home too. I hope you

find yourself looking back in a couple of years and getting to

realize how far you and your son have come.

Anne, Mom to Jack, 7.3, AS, DSI, ADD

>

>he shows many of the signs, such as the distant

> stare, trouble transitioning, obsessive interests, but also

strongly

> shows signs that don't apply, such as pointing out objects of

> interest and initiating conversations. I find this all very

> confusing, especially the contradictions!