Hi all...

[Guest guest]

Nicely said nne. Thanks for your comments hope homework goes well.

[Guest guest]

Luanne & Ty,

I know how difficult the treatments are. I will be thinking about both of you. I hope you guys have a great trip. Tell us all about it when you return.

[Guest guest]

Luanne thanks for updating us on Ty....It's been awhile since we've

heard from you.

You most certainly will be in our thoughts tomorrow and I hope the

Make-a Wish adventure is one of your family's greatest and most

memorable experiences....Praying for only good things for Ty (and you)

love jerry

[Guest guest]

Good luck Luanne, and pass on my best to Ty. I hope the Make a Wish is everything he wanted it to be!

Patty

-----Original Message-----From: BBNLU@... [mailto:BBNLU@...] Sent: Tuesday, June 10, 2003 9:17 PM Subject: [ ] Hi all...Hi everyone...Just wanted to get a chance to write before we leave tomorrow...Ty goes for another Remicade...and most of you know that this is a very trying day for us....he also has not been feeling well the last couple of nights...running temps of 101.5.....and all over not feeling well...spleen feeling uncomfortable again...he usually starts his medrol pack the day before his infusion...but we started a day early since he is running the temps..his doctors feels that we are going to have to look into doing more since Ty barely makes the 4 weeks inbetween infusions....the same thing happened last month with the temps...So if you could just keep him in your thoughts tomorrow...in hopes that he gets thru another treatment...and it is finally happening...Ty's Make a Wish trip will start on Monday ..the 16th...we are all pretty excited...it has taken alot to get this all together...since it is not a very normal wish...lol...well that is my Ty....well I will hopefully be talking here again before we leave....thanks in advance..Luanne Ty's mom

[Guest guest]

Emilie:

We are thinking the towns near Nashua or Manchester. Have you seen a pedi

rheumy in Lebanon?

I hope is not starting a flare and is feeling better soon. Keep us

posted.

Take care.

Patty

[Guest guest]

Patty,

I don't know if there is a ped rheumy full time in Lebanon but I think that

Abramson (sp?) from Burlington, VT spends time there.

Dartmouth-Hitchcock Medical Center runs a wonderful camp for kids with

rheumatic disease and Dr Abramson has been there the last two years. I

really like what I've seen of her and thinks she's great.

Liz

Re: Hi all...

Emilie:

We are thinking the towns near Nashua or Manchester. Have you seen a pedi

rheumy in Lebanon?

I hope is not starting a flare and is feeling better soon. Keep us

posted.

Take care.

Patty

[Guest guest]

Patty,

has not been seen by Dr Abramson. Em goes to Camp Dartmouth-Hitchcock

and that is how we met Dr A.

Liz

Re: Hi all...

Hi Liz:

Has been seen by Dr. Abrahsom and/or gone to the summer camp?

Thanks for the name.

Take care.

Patty

[Guest guest]

Patty,

We Live in Upstate NY and s rheumy is in Albany. I thought of Dart

because it's a really big hospital over there with a childrens center. My mom

lives in Tilton and is a realtor over there so we go by it whenever we go visit.

I just gave her enbrel a few days early hoping to stop what ever is

started. Her knee is now giving out now and then and it's normally not a good

thing when that happens. She's also totally exhausted. If she's not better by

the beginning of next week I will take her to her doc.

Liz-- can you tell me more about the camp over there?? I would really be

interested in getting involved in it. She doesn't know any other kids who

have JRA.

Well I am off to make dinner and then go to AEMT class..

take care,

Emilie

Re: Hi all...

Emilie:

We are thinking the towns near Nashua or Manchester. Have you seen a pedi

rheumy in Lebanon?

I hope is not starting a flare and is feeling better soon. Keep us

posted.

Take care.

Patty

[Guest guest]

Kiki, honestly, you sound just like how I've felt. I'm beginning to gain more

energy now with my thyroid medication (been on it a week and a half) along with

the other hormones. I still drag through some days, though, so I know my levels

are not totally right just yet.

Please keep me posted on things that are helping you. Maybe they would be good

for me, too.

Love,

Melinda )

Hi all...

Hi Melinda,

It's so good to be back. I've been reading, but not much else on here.

I think I'm back and feeling so much better! I hit on a combo of sups that

really seem to be doing the trick for me and my issues...LOL I still think I

could feel better, but I'm taking this with no arguments! For the last 2 or

3 weeks, I haven't been told I look tired all the time!!!! Let me tell you,

when you hear that all the time, it isn't in any way an ego booster...LOL

I'm actually getting things done around here, without dreading the fact I

have

to move to do it. And instead of only one maybe 2 fairly small things a

day, I can go for a lot longer and I'm not taking naps every day. I can't

even

describe how it was. But now of course, it's playing catch up with all that

wasn't done...LOL I can't win for losing!!!

And Wanda, I really haven't been ignoring you, and will be in contact. I

had tried to do some research for you, but that wasn't going well. I plan on

trying to see what I can find ASAP. Even tho you've probably done it all

yourself...LOL Anyway, I'll 'talk' to you soon sweetie...

Love and missed y'all...

[Guest guest]

Awww, thank you Liz... That gave my heart a smile...

Love ya,

Kiki

[Guest guest]

Hi Kiki,

I'm so glad that you're feeling better and that you're back! It isn't the same

here without you!!!!

Love, Liz

[Guest guest]

Awwww, thanks Connie... My heart just keeps smiling away cuz of all

ya'll...

Love ya,

Kiki

[Guest guest]

That is for sure Kiki!! Connie

>

> Hi Kiki,

>

> I'm so glad that you're feeling better and that you're back! It isn't

the same here without you!!!!

>

> Love, Liz

[Guest guest]

Welcome to the group Chris. There is a page on the group site where you can get questions to ask during your consult. I would also suggest that if you think of any questions to write them down and take them with you to the consult that way you will remeber them.

I would also take some time and read over some of the old post. There are many people here that can give you advice and be supportive. If you are intrested in meeting some of us in the group that live in the UK I am trying to set up a meeting. As of right now the meeting place is in Oxford on the 12 of November. The exact place and time wil be given later.

in Suffolk

[Guest guest]

Hi Chris:

Welcome to our group -- you have joined a bunch of spirited and informed

individuals

with this difficult disease who are here to help and support you.

Look in the files section for a list of questions to ask your GI and your

surgeon about the

condition to help you get treatment and find the best surgeon.

I am not aware that there is a common age for this disease to occur -- we have

infants

(well, their parents) and elderly in our group. We and the research find no

common traits

among those who get this.

Stress makes symtpoms worse, but does not cause achalasia -- at least that is

what we

think right now. My doctor said that most achalasia patients get labeled as

" hysterical

females " when they first present with symptoms and it often delays diagnosis. I

replied

" even the men? " and he said " yep, even the men.! "

Motility disorders of the GI system have been correlated with the presence of

major

depression -- an organic disorder. Not all people with depression get achalasia

and not

all people who have achalasia experience depression (though chronic health

problems can

sure trigger it).

Interestingly, the most promising and long-lasting procedure for managing this

disease (it

cannot be cured) is a procedure developed a hundred years ago or so called the

Heller

myotomy -- a cutting of two of the three layers of the esophagus (on the

outside) that

relaxes the uncontrolled closures of the LES. It can be done laproscopically or

thorascopically and surgeons argue whether a " wrap " is needed to reconstruct the

LES to

keep acid out.

Three types of treatments are out there: botox injections (don't go there --

generally only

for older people not healthy enough for surgery or those who need some

differential

diagnosis with other disorders or someone who needs a stopgap measure. Risk is

scar

tissue that can impair outcome of surgery.

Second option is dilation -- an endoscopic controlled tear of the muscle of the

LES -- risk

is perforation of the esophagus (fairly high rate) and needs a doctor who is

very skilled

and knowledgeable about achalasia.

Finally, the treatment of my choice -- heller myotomy -- hoped to have a

permanent or

long-standing result in symptom relief. Less than an hour under general

anesthesia --

just a couple of tough days following and you are swallowing again pretty

quickly.

Questions to ask: how many patients have you diagnosed/treated with achalasia,

who is

best in this area regarding this disorder, what is your opinion about the

differences in

treatment options -- see all the questions in the files section.

This is a rare disorder that is not well understood by the general medical

community -- it

needs specialized and highly technical care.

Let us know how we can help.

Peggy from Central California, USA

>

> Hi All,

>

> My name Is Ace, I'm 27 and live in a town called Crawley, near

> London in the UK.

>

> In the last six months I have had increasing difficulty in

> swallowing which has lead to severe weight loss. My doctor initially

> thought I had some sort of diverticulum (possibly Zenkers) but this

> was subsequently ruled out by a barium swallow. In the last week I

> had an endoscopic investigation of my oesophagus. During the

> procedure I was informed that my lower oesophagel sphincter was

> closed and that I may have a disease called Achalasia.

>

> I am due to see a consultant to discuss this tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you all as some of your

> posts have been both informative and needfully reassuring.

>

> I understand that this disease is quite uncommon for someone of my

> age. Is there anyone out there who was diagnosed with Achalasia

> around the same time who can share some of their experiences?

>

> I am a little concerned about stress. Is this a big factor for

> Achalasia sufferers? I have had a pretty stressful year and wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly appreciated.

>

[Guest guest]

Welcome to the group.

I started having symptoms at 18 and was misdiagnosed many times. I

was officially diagnosed and had my first dilation at 30 and my

Heller at 37. It does strike people at different times, often though

it is really how fast you get the right diagnosis.

I agree with others that you must be your own medical advocate

because very few doctors will know what you are talking about so

getting a doctor who specializes in Achalasia and NOT just GI is key.

I have educated my family doctor and several ER doctors over the

years.

Stress will make it worse but then stress makes every medical

condition worse and given that it is a neuro-muscular disease,

tension will cause the tightness to worsen. However I have had some

of my worse moments during some of my calmest years.

All the best with the doctor.

.... in Texas

>

> Hi All,

>

> My name Is Ace, I'm 27 and live in a town called Crawley,

near

> London in the UK.

>

> In the last six months I have had increasing difficulty in

> swallowing which has lead to severe weight loss. My doctor

initially

> thought I had some sort of diverticulum (possibly Zenkers) but this

> was subsequently ruled out by a barium swallow. In the last week I

> had an endoscopic investigation of my oesophagus. During the

> procedure I was informed that my lower oesophagel sphincter was

> closed and that I may have a disease called Achalasia.

>

> I am due to see a consultant to discuss this tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you all as some of your

> posts have been both informative and needfully reassuring.

>

> I understand that this disease is quite uncommon for someone of my

> age. Is there anyone out there who was diagnosed with Achalasia

> around the same time who can share some of their experiences?

>

> I am a little concerned about stress. Is this a big factor for

> Achalasia sufferers? I have had a pretty stressful year and

wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly appreciated.

>

[Guest guest]

>Yes, I was diagnosed at 29 - but I had symptoms at 27. I had surgery 6 months

ago and

am doing fine - I can eat anything I want to when before I could not eat

anything and had

difficulty with liquids also. I lost 25 lbs in about a month - but quickley

regained the

weight after surgery. I would go with the lap hellers - especially at your age

- from what

I've read dilatations have a better success rate with older people.

> Hi All,

>

> My name Is Ace, I'm 27 and live in a town called Crawley, near

> London in the UK.

>

> In the last six months I have had increasing difficulty in

> swallowing which has lead to severe weight loss. My doctor initially

> thought I had some sort of diverticulum (possibly Zenkers) but this

> was subsequently ruled out by a barium swallow. In the last week I

> had an endoscopic investigation of my oesophagus. During the

> procedure I was informed that my lower oesophagel sphincter was

> closed and that I may have a disease called Achalasia.

>

> I am due to see a consultant to discuss this tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you all as some of your

> posts have been both informative and needfully reassuring.

>

> I understand that this disease is quite uncommon for someone of my

> age. Is there anyone out there who was diagnosed with Achalasia

> around the same time who can share some of their experiences?

>

> I am a little concerned about stress. Is this a big factor for

> Achalasia sufferers? I have had a pretty stressful year and wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly appreciated.

>

[Guest guest]

Dear

Sorry you are having to contend with this but I for one am very happy to welcome

you to this group. (By the way, are you a or a ?)

I live in the UK too, but in the North- nearest city is Leeds. I am twice your

age, 55, but there are many people in this group in your age group, so you will

get a lot of support and understanding from people on your wavelength andalso

plenty of support and understanding from us " crinklies " .

Please let us know what the Consultant says to you. I hope for your sake that

he talks about surgery sooner rather than later, when the oesophagus has widened

and gone out of shape. I wish I knew at your age what I know now, but at that

time it seems like even the Doctors didn't know so much either, so that's how it

goes.

I would recommend to you if you want someone to relate to. He is

well-informed and kind. It would be nice if you could join the meet-up he is

planning. I am hoping that I will be able to go.

Love from Ann (in Huddersfield, West Yorkshire.) XXX

>

> Hi All,

>

> My name Is Ace, I'm 27 and live in a town called Crawley, near

> London in the UK.

>

> In the last six months I have had increasing difficulty in

> swallowing which has lead to severe weight loss. My doctor initially

> thought I had some sort of diverticulum (possibly Zenkers) but this

> was subsequently ruled out by a barium swallow. In the last week I

> had an endoscopic investigation of my oesophagus. During the

> procedure I was informed that my lower oesophagel sphincter was

> closed and that I may have a disease called Achalasia.

>

> I am due to see a consultant to discuss this tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you all as some of your

> posts have been both informative and needfully reassuring.

>

> I understand that this disease is quite uncommon for someone of my

> age. Is there anyone out there who was diagnosed with Achalasia

> around the same time who can share some of their experiences?

>

> I am a little concerned about stress. Is this a big factor for

> Achalasia sufferers? I have had a pretty stressful year and wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly appreciated.

>

[Guest guest]

I was diagnosed at 21 finally

after I already knew something was wrong from about 12 years old. Yes stress

does make things worse. Make sure to ask what kind of procedures they have

done and how many and the outcome of those.

From: achalasia

[mailto:achalasia ] On Behalf

Of lilac_blossom_lady

Sent: Wednesday, November 02, 2005

7:31 AM

achalasia

Subject: Re: Hi All...

Dear

Sorry you are having to contend with this but I

for one am very happy to welcome you to this group. (By the way, are you

a or a ?)

I live in the UK

too, but in the North- nearest city is Leeds.

I am twice your age, 55, but there are many people in this group in your age

group, so you will get a lot of support and understanding from people on your

wavelength andalso plenty of support and understanding from us

" crinklies " .

Please let us know what the Consultant says to

you. I hope for your sake that he talks about surgery sooner rather

than later, when the oesophagus has widened and gone out of shape. I wish I

knew at your age what I know now, but at that time it seems like even the Doctors

didn't know so much either, so that's how it goes.

I would recommend to you if you want

someone to relate to. He is well-informed and kind. It would be

nice if you could join the meet-up he is planning. I am hoping that I will be

able to go.

Love from Ann (in Huddersfield, West

Yorkshire.) XXX

>

> Hi All,

>

> My name Is Ace, I'm 27 and live in a

town called Crawley, near

> London in the UK.

>

> In the last six months I have had increasing

difficulty in

> swallowing which has lead to severe weight

loss. My doctor initially

> thought I had some sort of diverticulum

(possibly Zenkers) but this

> was subsequently ruled out by a barium

swallow. In the last week I

> had an endoscopic investigation of my

oesophagus. During the

> procedure I was informed that my lower

oesophagel sphincter was

> closed and that I may have a disease called

Achalasia.

>

> I am due to see a consultant to discuss this

tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you

all as some of your

> posts have been both informative and

needfully reassuring.

>

> I understand that this disease is quite

uncommon for someone of my

> age. Is there anyone out there who was

diagnosed with Achalasia

> around the same time who can share some of

their experiences?

>

> I am a little concerned about stress. Is this

a big factor for

> Achalasia sufferers? I have had a pretty

stressful year and wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly

appreciated.

>

[Guest guest]

Hi Ace. My name is Dawn and I am from Ohio. I presented with

symptoms suddenly. Fine one day and then the next unable to swallow

water. It was awful, I was 21 and a new mom.Yeah, I was probably

under some stress..to say the least. But I don't think that

contributed. See..I have a family history of this. MY grandma would

get up from the table choking and walking around with her hands over

her head. I was young at that time. And she was not actually

diagnosed with achalasia until maybe 8-9 yrs ago.

I use th think this was UNCOMMON til I found this group, but in

general I guess it is rare. I still think that the DR'S do not fully

understand the causes and I have been told numerous time this is not

hereditary. But I will believe what I want.

Hang in there. This disease is ever SO ANNOYING, BUT I had the open

heller 12 yrs and 2 months ago and I am very well. Get educated.

Thats the first step. And don't worry too darn much. Thats why we are

here.

Good Luck,

Dawn

>

> Hi All,

>

> My name Is Ace, I'm 27 and live in a town called Crawley,

near

> London in the UK.

>

> In the last six months I have had increasing difficulty in

> swallowing which has lead to severe weight loss. My doctor

initially

> thought I had some sort of diverticulum (possibly Zenkers) but this

> was subsequently ruled out by a barium swallow. In the last week I

> had an endoscopic investigation of my oesophagus. During the

> procedure I was informed that my lower oesophagel sphincter was

> closed and that I may have a disease called Achalasia.

>

> I am due to see a consultant to discuss this tomorrow.

>

> Any suggestions on what I should be asking?

>

> I thought I'd introduce myself and thank you all as some of your

> posts have been both informative and needfully reassuring.

>

> I understand that this disease is quite uncommon for someone of my

> age. Is there anyone out there who was diagnosed with Achalasia

> around the same time who can share some of their experiences?

>

> I am a little concerned about stress. Is this a big factor for

> Achalasia sufferers? I have had a pretty stressful year and

wondered

> if this has excuberated my symptoms?

>

> Any info anyone can give would be greatly appreciated.

>

[Guest guest]

Dawn wrote:

.... I have been told numerous time this is not hereditary. But I will believe what I want. ...

There have been others in this group that have said that they have

someone else in their family that also has swallowing problem, some,

very few, have actually been diagnosed with achalasia. Those that have

swallowing problems that seem like achalasia but have not been

diagnosed with achalasia are probably not achalasia. These kinds of

swallowing problems are much more common than achalasia. Many people go

to doctors with symptoms like ours, almost all are diagnosed with

something else.

Genetics causes things like fair skin. People with the genetics for

fair skin are more likely to get skin cancer. The genetics for fair

skin does not cause skin cancer. People without the genetics for fair

skin can also get skin cancer. And most with fair skin will not get

skin cancer. Some people may have genetics that make them more likely

to get achalasia than others. If such a thing is the case the genetic

effect must be very very weak, because most of us do not have family

members with it.

With or without a genetic factor to achalasia, there must be other

factors to the cause of it. No one knows, but they could be

environmental or biological (virus). Families have a big impact on

environment and biological factors. They eat the same foods, are

exposed to the same toxins, and share viruses. They even have a big

impact on stress and how stress is coped with, or not. So, having

achalasia in common with a family member may be due to other factors

than genetics, whether there is, or isn't a genetic factor.

Anyway, the risk that someone will get it, even if they have family

that does, is very low. We need to remember that so we don't scare all

the moms and dads and those that want to be, or our children.

BTW: I am talking about idiopathic achalasia, which most of us have,

and not something like AAA syndrome.

notan

[Guest guest]

I am very curious has to how they diagnosed you. Did you have some

postive test results and if so which ones? I have a specific reason

for asking because the same thing happened to me. By the way, did

they happen to check your thyroid for autoimmune disease?

C.

>

> Hi everyone, I am new here and I thought I would drop a little note

> to tell u who I am. I am a mom of 2 sons, 32 yrs old. I was just

> diagnosed with a very vauge condition... Inflamitory arthritic

> disease, and as everyone knows that covers, RA , Lupus, and a

> plethera of other conditions. I started on prednisone, and god was

> I happy, then after 2 weeks they took me off, and put me on an

> antimalaria med, (come to find out it was a sulfa) so when my throat

> closed off and I couldnt breath, they took me off of that one...(go

> figure). Then they wanted me to try the name brand of it...........

> (thinking I was allergic to a generic componet of it) and my general

> dr said NO! So after 2 weeks of wishing I could jump out in front

> of a bus (or hell, jump at all) I went and saw my general dr today

> and he put me back on Prednisone, so hopefully here in 24hrs (ish) I

> will be able to do something besides lay in bed.

>

> This condition came on like a tornado... I went to bed fine one day

> and the next morning I couldnt walk..... Did anyone elses start like

> that??

>

> I have found myself to be popping wayyyyyyyyy too many pain meds as

> of late, between the Lortab & Darvocet and Norco.... If Im not

> carefull I am going go to sleep and not get up.! They have to do

> something to get this in check!!!

>

> Well thats my story... wish it wasnt...

>

> Its cold here in SE Illinois...so I am going to take a

> nap...

>

> Thanks all for having me, Hope to meet some of you soon.

>

> Kerry

>

[Guest guest]

They ran a gammit of bloodwork, and mri's n xrays... and my RA factor was up but ANA was inconclusive... the rheumatologist just went from there. All my other blood work came back close to normal.

Kerry

[Guest guest]

Kerry

See if you can't convince one of your Docs to test for hasimoto's

thyroitis anti-bodies. It is not enough to just have a TSH test

[thyroid stimulating hormone], so don't let them tell you your

thyroid is fine if they already ran the test. It is one of the thing

I was finally dx'd with and it is, what I believe, caused the

initial, every joint in my body aching and can't walk across a

room... etc...one day I was fine and the next not, thing.

They first dx'd me with Systemic Lupus and treated me with steriods.

Now they say I never had Lupus and I agree with that especially since

Hashimoto's can cause similar symtoms. Those initial symptoms

eventually went away and I have no idea whether or not the steroids

helped or not.

Let me know if you have any luck getting the test and what the

results are.

C.

>

> They ran a gammit of bloodwork, and mri's n xrays... and my RA

factor was up but ANA was inconclusive... the rheumatologist just

went from there. All my other blood work came back close to normal.

>

> Kerry

>

[Guest guest]

Thank you for the info I will look into it. I am just so waiting for the drs to find some sort of medication that will get me out of bed for more than a day or two..

Kerry