Newly diagnosed

October 19, 2001

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

October 20, 2001

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). BUT 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? -sigal

October 20, 2001

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. Later and thanks for the

advise!

June 10, 2002

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.

>

June 10, 2002

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.

June 10, 2002

,

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.

>

_________________________________________________________________

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October 5, 2002

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

October 7, 2002

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.

October 15, 2002

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

October 15, 2002

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,

October 15, 2002

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.

October 15, 2002

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