Re: I feel lost

[Guest guest]

You are definitely a strong person, who is going through a lot. Sometimes it is hard to keep your spirit up when you aren't feeling well. There are times when you feel totally frustrated and miserable. Today, I had a great day, with no nausea, so I am a happy camper...but I know those days when it is basically, miserable. I have been in denial since my diagnosis a couple years back...now, I am realizing this is chronic and I need support to get through this, so I joined this group(the day before I screamed and cried then found this group on the internet). We all know how bad it can get...and sometimes the docs make us feel worse about the situation. Take care, ledromangirl <dromangirl@...> wrote: I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night

and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you

guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears

lol:)

[Guest guest]

you're going through a lot..

I haven't been through the

teeth and hair falling out

...all at once ?

>

> I thought I knew all I could know about A but it seems that since

I

> have joined this group I feel overwhelmed and quite in the dark

> about a lot of things.

> I have had A since birth and I am 43 yrs old. My doctor says he

does

> not want to do an esophagectomy unless I am at " death's door " Of

> course he used different words. He also said that my quality of

life

> would change drastically. I am wondering is this because of the

> length of time I have had A and also the fact that I have had 2

> Heller Myotomies because from what I've read others who have had

> the esophagectomy seem to be recovering fine.

>

> I do feel sick all the time. I have the chest pain, spasms,

choking

> during the night and severe acid reflux. I cannot eat if I am

going

> out and I cant eat too late because it would be a difficult night.

I

> am weak, fatigued and have shortness of breath. I can not walk

very

> far without having to stop to catch my breath. I become shaky a

lot

> (hypoglycemic?) Because of the lack of sleeping and eating my

> processing has slowed down and I feel that I am forgetiing things

a

> lot more. I developed anemia and I get dizzy and nauseaus a lot.

>

> I was a teacher for eleven years and have had to stop due to these

> symptoms.

>

> I have a diverticulum the size of an egg that has to be checked

> every 6 months during my laparoscopy and biopsy. AND recently I

have

> developed other conditions which have nothing to do with my A but

do

> not help the situation.

> I read your stories and feel like I am not as strong as others who

> live with A.

> There is so much to this disease that I can not function as

normally

> as you guys. What's wrong?

> I'm both embarrased and frightened.

>

> I am currently on long term disability and my family doctor

> recommneded I go for social secutrity disability benefits He even

> said that he would help out with all the paper work.

>

> I have lost 43 lbs in 2 months without trying.

>

> I have lived with A all my llife but this time around it is

> different I feel my body progressively getting worse.

>

> Am I being a big baby?

> I have always thought of myself as strong but lately feel very

weak

> and wussy.

>

> What's wrong? I am secheduled for a biopsy in a few weeks . I

wonder

> if they are going to find something because I feel different. Let

me

> add that due to not eatiing or sleeping and constant vomitting my

> teeth have been falling out and my hair as well.

> Okay this will be the last of my whining. Thank goodness I have

> somewhere to vent and share my irrational fears lol:)

>

[Guest guest]

You are not a big baby!!! This disease can be debilitating,

as I very well know. At my worst time I was sick constantly, choking

at night, lost 35 lbs was down to 97lbs at my lowest, was malnourished, had NO

energy, was in and out of my docs office every other day, in and out of the

hospital for rehydration. If I ever get this bad again, I will go for disability

and have an ectomy done. That time of my life was not pretty, so I know

what your going through. Letting my body get to that point has caused

long term problems with my immune system and other things, to where now I function,

but my system just can’t take exertion or being sick. I still to

this day eat high calorie foods and sleep a lot, although the sleeping we think

has some to do with my thyroid going south on me along with a lot of the other

symptoms and the fact that all the women in my family have thyroid problems

start around their later 30s.

Just like my thyroid issue, they keep saying I’m in the

normal range!! Normal for who? You? My system is so sensitive now that

low for someone else is bottomed out for me. I am going to go to an

endocrinologist now, since my regular doc despite all my symptoms says I’m

“normal”. Sorry but, sleeping all the time, moody, hair falling

out, cold hands and feet are not normal for a 35 year old. Along with

other things I won’t mention!!!

Keep a close eye on yourself and don’t let a doctor

dictate what quality of life you want to have. If you are willing to deal

with some of the things that go along with ectomys then I would look to get a

second opinion. There are plenty of people on this board that I’m

sure would be willing to talk to you about it!! I’m sure those who read

your post will chime in at some point.

Take care of you, only you know your body best and what it

needs.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of dromangirl

Sent: Saturday, September 09, 2006 11:40 PM

achalasia

Subject: I feel lost

I thought I knew all I could know about A but

it seems that since I

have joined this group I feel overwhelmed and quite in the dark

about a lot of things.

I have had A since birth and I am 43 yrs old. My doctor says he does

not want to do an esophagectomy unless I am at " death's door " Of

course he used different words. He also said that my quality of life

would change drastically. I am wondering is this because of the

length of time I have had A and also the fact that I have had 2

Heller Myotomies because from what I've read others who have had

the esophagectomy seem to be recovering fine.

I do feel sick all the time. I have the chest pain, spasms, choking

during the night and severe acid reflux. I cannot eat if I am going

out and I cant eat too late because it would be a difficult night. I

am weak, fatigued and have shortness of breath. I can not walk very

far without having to stop to catch my breath. I become shaky a lot

(hypoglycemic?) Because of the lack of sleeping and eating my

processing has slowed down and I feel that I am forgetiing things a

lot more. I developed anemia and I get dizzy and nauseaus a lot.

I was a teacher for eleven years and have had to stop due to these

symptoms.

I have a diverticulum the size of an egg that has to be checked

every 6 months during my laparoscopy and biopsy. AND recently I have

developed other conditions which have nothing to do with my A but do

not help the situation.

I read your stories and feel like I am not as strong as others who

live with A.

There is so much to this disease that I can not function as normally

as you guys. What's wrong?

I'm both embarrased and frightened.

I am currently on long term disability and my family doctor

recommneded I go for social secutrity disability benefits He even

said that he would help out with all the paper work.

I have lost 43 lbs in 2 months without trying.

I have lived with A all my llife but this time around it is

different I feel my body progressively getting worse.

Am I being a big baby?

I have always thought of myself as strong but lately feel very weak

and wussy.

What's wrong? I am secheduled for a biopsy in a few weeks . I wonder

if they are going to find something because I feel different. Let me

add that due to not eatiing or sleeping and constant vomitting my

teeth have been falling out and my hair as well.

Okay this will be the last of my whining. Thank goodness I have

somewhere to vent and share my irrational fears lol:)

[Guest guest]

is saying a lot here and I a gree with her. You need to press the doctors to get your health better. The diverticulum can be removed. That might help you out a little if that was not there. Get a second opinion, hopfully from a top rated doctor that knows our disease. in Georgia co- founder www.achalasia.us Warren <juliecwarren@...> wrote: You are not a big baby!!! This disease can be debilitating, as I very well know. At my worst time I was sick constantly, choking at night, lost 35 lbs was down to 97lbs at my lowest, was malnourished, had NO energy, was in and out of my docs office every other day, in and out of the hospital for rehydration. If I ever get this bad again, I will go for disability and have an ectomy done. That time of my life was not pretty, so I know what your going through. Letting my body get to that point has caused long term problems with my immune system and other things, to where now I function, but my system just can’t take exertion or being sick. I still to this day eat high calorie foods and sleep a lot, although the sleeping we think has some to do with my thyroid going south on me along with a lot of the other symptoms and the fact that all the women in my family have thyroid

problems start around their later 30s. Just like my thyroid issue, they keep saying I’m in the normal range!! Normal for who? You? My system is so sensitive now that low for someone else is bottomed out for me. I am going to go to an endocrinologist now, since my regular doc despite all my symptoms says I’m “normal”. Sorry but, sleeping all the time, moody, hair falling out, cold hands and feet are not normal for a 35 year old. Along with other things I won’t mention!!! Keep a close eye on yourself and don’t let a doctor dictate what quality of life you want to have. If you are willing to deal with some of the things that go along with ectomys then I would look to get a second

opinion. There are plenty of people on this board that I’m sure would be willing to talk to you about it!! I’m sure those who read your post will chime in at some point. Take care of you, only you know your body best and what it needs. C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of dromangirlSent: Saturday, September 09, 2006 11:40 PMachalasia Subject: I feel lost I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the

fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which

have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and

constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:) <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

First of all, , please share where

you live, as we might be able to help you find the best possible doctor

specializing in achalasia and eseophagectomy. It is important that you

assess your “quality of life” as it is now, compared to what it

could possibly be after surgery. It is possible your physician may just

not know enough about esophagectomy. I’m not promoting the surgery

and it is not something doctors or patients should rush into. It is

usually performed as a last resort when nothing else seems to be working and

one’s overall health and quality of life is significantly compromised. It

truly sounds like you are suffering some major symptoms that should be taken

seriously and assessed thoroughly. Run don’t walk for a

second opinion, or maybe even a third. Although we in this support group are

very knowledgeable and share great information, the decision is ultimately

yours and then your doctor’s. If some of the symptoms you are

describing are a result of your advanced achalasia, these need to be looked

into soon and evaluated. My achalasia is very advanced, also, and esophagectomy

is recommended for me as well. I am scheduled for a second opinion in a couple

of weeks. I share some of the same symptoms you have but possibly not

quite to the same extent. I know that this surgery is inevitable for me, and

will probably schedule it sometime in June 2007, after I complete a course I am

taking at UCLA. Please keep us apprised of your status and if you need

help finding another doctor or two, some of us, I am sure, can help out.

Take care,

Z.

From: achalasia [mailto:achalasia ] On Behalf Of dromangirl

Sent: Saturday, September 09, 2006

8:40 PM

achalasia

Subject: I feel lost

I thought I knew all I could know about A but it seems

that since I

have joined this group I feel overwhelmed and quite in the dark

about a lot of things.

I have had A since birth and I am 43 yrs old. My doctor says he does

not want to do an esophagectomy unless I am at " death's door " Of

course he used different words. He also said that my quality of life

would change drastically. I am wondering is this because of the

length of time I have had A and also the fact that I have had 2

Heller Myotomies because from what I've read others who have had

the esophagectomy seem to be recovering fine.

I do feel sick all the time. I have the chest pain, spasms, choking

during the night and severe acid reflux. I cannot eat if I am going

out and I cant eat too late because it would be a difficult night. I

am weak, fatigued and have shortness of breath. I can not walk very

far without having to stop to catch my breath. I become shaky a lot

(hypoglycemic?) Because of the lack of sleeping and eating my

processing has slowed down and I feel that I am forgetiing things a

lot more. I developed anemia and I get dizzy and nauseaus a lot.

I was a teacher for eleven years and have had to stop due to these

symptoms.

I have a diverticulum the size of an egg that has to be checked

every 6 months during my laparoscopy and biopsy. AND recently I have

developed other conditions which have nothing to do with my A but do

not help the situation.

I read your stories and feel like I am not as strong as others who

live with A.

There is so much to this disease that I can not function as normally

as you guys. What's wrong?

I'm both embarrased and frightened.

I am currently on long term disability and my family doctor

recommneded I go for social secutrity disability benefits He even

said that he would help out with all the paper work.

I have lost 43 lbs in 2 months without trying.

I have lived with A all my llife but this time around it is

different I feel my body progressively getting worse.

Am I being a big baby?

I have always thought of myself as strong but lately feel very weak

and wussy.

What's wrong? I am secheduled for a biopsy in a few weeks . I wonder

if they are going to find something because I feel different. Let me

add that due to not eatiing or sleeping and constant vomitting my

teeth have been falling out and my hair as well.

Okay this will be the last of my whining. Thank goodness I have

somewhere to vent and share my irrational fears lol:)

[Guest guest]

Good post Steve,

You're going to make it through, as has been doing, and never turn around to second guess yourself. Your confidence and positive attitude will go a long way for you to succeed.

In a message dated 9/10/2006 7:57:45 P.M. Eastern Daylight Time, lennoxsteve@... writes:

Hi there,

I think I know some of the symptoms you describe. As you may have read from my previous posts I am 42 and have end stage achalasia. I too become shakey. I can find no sensible explanation for this. Initially I thought it was blood pressure and then hypoglycaemia. Neither have been proper explanations as I have kept my eye on both measurements. But, the shaking is real. I now wonder if it is related to nutrition. I also get the shortness of breath (which I think is probably worse than food getting stuck).

I have opted for the oesophagectomy but I am curious as to why your Dr thinks your quality of life will be worse. Many patients go through an oesophagectomy and have an excellent quality of life. Infact the research demonstrates that after 18 months oesophagectomy patients have a very similar quality of life and levels of physical fitness as their peers in the same age group. How can this be worse? True, smaller portions of food, but at least it goes down. Six meals a day, such choice. A little blood sugar problems for a year, but that resolves. (I know I have simplified it...I have to for my benefit).

Don't get me wrong I am terrified of the procedure. But I think it has to be better than what I am going through now. You most certainly are not being a big baby. Poor nutrition affects the whole body. I think you need to talk to someone who has a different perspective on the options. The comment about oesophagectomy is not an option unless you are on "death's door" is not shared by all consultants.

All the best

STEVE

I feel lost

I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic? ) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

[Guest guest]

Hi there,

I think I know some of the symptoms you describe. As you may have read from my previous posts I am 42 and have end stage achalasia. I too become shakey. I can find no sensible explanation for this. Initially I thought it was blood pressure and then hypoglycaemia. Neither have been proper explanations as I have kept my eye on both measurements. But, the shaking is real. I now wonder if it is related to nutrition. I also get the shortness of breath (which I think is probably worse than food getting stuck).

I have opted for the oesophagectomy but I am curious as to why your Dr thinks your quality of life will be worse. Many patients go through an oesophagectomy and have an excellent quality of life. Infact the research demonstrates that after 18 months oesophagectomy patients have a very similar quality of life and levels of physical fitness as their peers in the same age group. How can this be worse? True, smaller portions of food, but at least it goes down. Six meals a day, such choice. A little blood sugar problems for a year, but that resolves. (I know I have simplified it...I have to for my benefit).

Don't get me wrong I am terrified of the procedure. But I think it has to be better than what I am going through now. You most certainly are not being a big baby. Poor nutrition affects the whole body. I think you need to talk to someone who has a different perspective on the options. The comment about oesophagectomy is not an option unless you are on "death's door" is not shared by all consultants.

All the best

STEVE

I feel lost

I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become

shaky a lot (hypoglycemic? ) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I

have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

[Guest guest]

I have to agree with . You need to look for the positive and how much better things can be. A positive attitude will help you though any ordeal that may come your way. Pluss we are all pulling for you too and are wishing you the best. in Georgia.cynmark24@... wrote: Good post Steve, You're

going to make it through, as has been doing, and never turn around to second guess yourself. Your confidence and positive attitude will go a long way for you to succeed. In a message dated 9/10/2006 7:57:45 P.M. Eastern Daylight Time, lennoxsteve (DOT) co.uk writes: Hi there, I think I know some of the symptoms you describe. As you may have read from my previous posts I am 42 and have end stage achalasia. I too become shakey. I can find no sensible explanation for this. Initially I thought it was blood pressure and then hypoglycaemia. Neither have been proper explanations as I have kept my eye on both measurements. But, the shaking is real. I now wonder if it is related to nutrition. I also get the shortness of breath (which I think is probably worse than food getting stuck). I have opted for the oesophagectomy but I am curious as to why your Dr thinks your quality of life will be worse. Many patients go through an oesophagectomy and have an excellent quality of life. Infact the

research demonstrates that after 18 months oesophagectomy patients have a very similar quality of life and levels of physical fitness as their peers in the same age group. How can this be worse? True, smaller portions of food, but at least it goes down. Six meals a day, such choice. A little blood sugar problems for a year, but that resolves. (I know I have simplified it...I have to for my benefit). Don't get me wrong I am terrified of the procedure. But I think it has to be better than what I am going through now. You most certainly are not being a big baby. Poor nutrition affects the whole body. I think you need to talk to someone who has a different perspective on the options. The comment about oesophagectomy is not an option unless

you are on "death's door" is not shared by all consultants. All the best STEVE I feel lost

I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to

catch my breath. I become shaky a lot (hypoglycemic? ) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with

all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:) <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG

src=" ">

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Thanks le You're right sometimes the doctors do make you feel worse and I'm so glad that I have this group where I can say "I feel lost" and know that any response to that would be helpful to me because it is coming from others who have Ale Beech <idolwild2002@...> wrote: You are definitely a strong person, who is going through a lot. Sometimes it is hard to keep your spirit up when you aren't feeling well. There are times when you feel totally frustrated and

miserable. Today, I had a great day, with no nausea, so I am a happy camper...but I know those days when it is basically, miserable. I have been in denial since my diagnosis a couple years back...now, I am realizing this is chronic and I need support to get through this, so I joined this group(the day before I screamed and cried then found this group on the internet). We all know how bad it can get...and sometimes the docs make us feel worse about the situation. Take care, ledromangirl <dromangirl > wrote: I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an

esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven

years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but

lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

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Not all at once it has been a slow process but the last few months 2 of my front teeth came out at once and I had to get it fixed stat! so others haven't been through this? Like I said maybe it's because I was born with A and have had it for 43 years. I don't know <empirelimo@...> wrote: you're going through a lot..I haven't been through theteeth and hair falling out..all at once ?>> I thought I knew all I could know about A but it seems that since I > have joined this group I feel overwhelmed and quite in the dark > about a lot of things. > I have had A since birth and I am 43 yrs old. My doctor says he does > not want to do an esophagectomy unless I am at "death's door" Of > course he used different words. He also said that my quality of life > would change drastically. I am wondering is this because of the > length of time I have had A and also the fact that I have had 2 > Heller Myotomies because from what I've read others who have had > the esophagectomy seem to be recovering fine.> > I do feel sick all the time. I have the chest pain, spasms, choking > during the night and severe acid reflux. I cannot eat

if I am going > out and I cant eat too late because it would be a difficult night. I > am weak, fatigued and have shortness of breath. I can not walk very > far without having to stop to catch my breath. I become shaky a lot > (hypoglycemic?) Because of the lack of sleeping and eating my > processing has slowed down and I feel that I am forgetiing things a > lot more. I developed anemia and I get dizzy and nauseaus a lot.> > I was a teacher for eleven years and have had to stop due to these > symptoms.> > I have a diverticulum the size of an egg that has to be checked > every 6 months during my laparoscopy and biopsy. AND recently I have > developed other conditions which have nothing to do with my A but do > not help the situation. > I read your stories and feel like I am not as strong as others who > live with A. > There

is so much to this disease that I can not function as normally > as you guys. What's wrong? > I'm both embarrased and frightened.> > I am currently on long term disability and my family doctor > recommneded I go for social secutrity disability benefits He even > said that he would help out with all the paper work.> > I have lost 43 lbs in 2 months without trying. > > I have lived with A all my llife but this time around it is > different I feel my body progressively getting worse. > > Am I being a big baby?> I have always thought of myself as strong but lately feel very weak > and wussy.> > What's wrong? I am secheduled for a biopsy in a few weeks . I wonder > if they are going to find something because I feel different. Let me > add that due to not eatiing or sleeping and constant vomitting my > teeth have been falling

out and my hair as well. > Okay this will be the last of my whining. Thank goodness I have > somewhere to vent and share my irrational fears lol:)>

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[Guest guest]

Oh my gosh Thank you It's good to know that I am not the only one who gets cold hands and feet and hair falling out. I am always asking someone to turn down the air conditioner and I walk around with a sweater in 90 plus weather. I wish you weren't going through that but It feels good to know that I am not alone and that I am not acting like a big baby! Thanks I hate being tired and sleepy all the time too Warren <juliecwarren@...> wrote: You are not a big baby!!! This disease can be debilitating, as I very well know. At my worst time I was sick constantly, choking at night, lost 35 lbs was down to 97lbs at my lowest, was malnourished, had NO energy, was in and out of my docs office every other day, in and out of the hospital for rehydration. If I ever get this bad again, I will go for disability and have an ectomy done. That time of my life was not pretty, so I know what your going through. Letting my body get to that point has caused long term problems with my immune system and other things, to where now I function, but my system just can’t take exertion or being sick. I still to this day eat high calorie foods and sleep a lot, although the sleeping we think has some to do with my thyroid going south on me along with a lot of the other symptoms and the fact that all the women in my

family have thyroid problems start around their later 30s. Just like my thyroid issue, they keep saying I’m in the normal range!! Normal for who? You? My system is so sensitive now that low for someone else is bottomed out for me. I am going to go to an endocrinologist now, since my regular doc despite all my symptoms says I’m “normal”. Sorry but, sleeping all the time, moody, hair falling out, cold hands and feet are not normal for a 35 year old. Along with other things I won’t mention!!! Keep a close eye on yourself and don’t let a doctor dictate what quality of life you want to have. If you are willing to deal with some of the things that go along with ectomys then I would look

to get a second opinion. There are plenty of people on this board that I’m sure would be willing to talk to you about it!! I’m sure those who read your post will chime in at some point. Take care of you, only you know your body best and what it needs. C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of dromangirlSent: Saturday, September 09, 2006 11:40 PMachalasia Subject: I feel lost I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time

I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have

developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that

due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

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[Guest guest]

Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian. I really don't want to have any more surgery especially since it may change the quality of life... another opinion? This was my other opinion I guess I should go fo another one as soon as I get my proactive momentum going again right now I need to focus on not giving in and thinking positive and reaching out to others like yourself to persuade me to try again. smichele2 <smichele2@...> wrote: First of all, , please share where you live, as we might be able to help you find the best possible doctor specializing in achalasia and eseophagectomy. It is important that you assess your “quality of life” as it is now, compared to what it could possibly be after surgery. It is possible your physician may just not know enough about esophagectomy. I’m not promoting the surgery and it is not something doctors or patients should rush into. It is usually performed as a last resort when nothing else seems to be working and one’s overall health and quality of life is significantly compromised. It truly sounds like you are suffering some major symptoms that should be taken seriously and assessed

thoroughly. Run don’t walk for a second opinion, or maybe even a third. Although we in this support group are very knowledgeable and share great information, the decision is ultimately yours and then your doctor’s. If some of the symptoms you are describing are a result of your advanced achalasia, these need to be looked into soon and evaluated. My achalasia is very advanced, also, and esophagectomy is recommended for me as well. I am scheduled for a second opinion in a couple of weeks. I share some of the same symptoms you have but possibly not quite to the same extent. I know that this surgery is inevitable for me, and will probably schedule it sometime in June 2007, after I complete a course I am taking at UCLA. Please keep us apprised of your status and if you need help finding another doctor or two, some of us, I am sure, can help out. Take care, Z. From: achalasia [mailto:achalasia ] On Behalf Of dromangirlSent: Saturday, September 09, 2006 8:40 PMachalasia Subject: I feel lost I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark

about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am

forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I

feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

This is what I was getting fromthe post that ohters have had the esophagectomy and there quality of life has improved, This is ouzzling and as soon as I get my act together I will seek more medical advice so the shortness of breath and shakiness is not just me?Steve Lennox <lennoxsteve@...> wrote: Hi there, I think I know some of the symptoms you describe. As you may have read from my previous posts I am 42 and have end stage achalasia. I too become shakey. I can find no sensible explanation for this. Initially I thought it was blood pressure and then hypoglycaemia. Neither have been proper explanations as I have kept my eye on both measurements. But, the shaking is real. I now wonder if it is related to nutrition. I also get the shortness of breath (which I think is probably worse than food getting stuck). I have opted for the oesophagectomy but I am curious as

to why your Dr thinks your quality of life will be worse. Many patients go through an oesophagectomy and have an excellent quality of life. Infact the research demonstrates that after 18 months oesophagectomy patients have a very similar quality of life and levels of physical fitness as their peers in the same age group. How can this be worse? True, smaller portions of food, but at least it goes down. Six meals a day, such choice. A little blood sugar problems for a year, but that resolves. (I know I have simplified it...I have to for my benefit). Don't get me wrong I am terrified of the procedure. But I think it has to be better than what I am going through now. You most certainly are not being a big baby. Poor nutrition affects the

whole body. I think you need to talk to someone who has a different perspective on the options. The comment about oesophagectomy is not an option unless you are on "death's door" is not shared by all consultants. All the best STEVE I feel lost I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms, choking during the night and severe acid reflux. I cannot eat if I am going out

and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic? ) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not function as normally as you guys. What's wrong? I'm both embarrased and

frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears lol:)

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

No problem!  I just hope they find the cause soon, I don’t

believe I would be to attractive bald!! LOL.  Plus its starting to embarrass me

some.  I go to the new doc in October to see if they can help figure this out!

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of debbie

roman

Sent: Sunday, September 10, 2006 10:52 PM

achalasia

Subject: RE: I feel lost

Oh my gosh Thank you

It's good to know that I am not the only one who gets

cold hands and feet and hair falling out. I am always asking someone to

turn down the air conditioner and I walk around with a sweater in 90 plus

weather.

I wish you weren't going through that but It feels

good to know that I am not alone and that I am not acting like a big baby!

Thanks

I hate being tired and sleepy all the time too

Warren <juliecwarren@...>

wrote:

You are not a

big baby!!! This disease can be debilitating, as I very well know.

At my worst time I was sick constantly, choking at night, lost 35 lbs was

down to 97lbs at my lowest, was malnourished, had NO energy, was in and out of

my docs office every other day, in and out of the hospital for rehydration. If

I ever get this bad again, I will go for disability and have an ectomy

done. That time of my life was not pretty, so I know what your going

through. Letting my body get to that point has caused long term problems

with my immune system and other things, to where now I function, but my system

just can’t take exertion or being sick. I still to this day eat

high calorie foods and sleep a lot, although the sleeping we think has some to

do with my thyroid going south on me along with a lot of the other symptoms and

the fact that all the women in my family have thyroid problems start around

their later 30s.

Just like my

thyroid issue, they keep saying I’m in the normal range!! Normal

for who? You? My system is so sensitive now that low for someone else is

bottomed out for me. I am going to go to an endocrinologist now, since my

regular doc despite all my symptoms says I’m “normal”. Sorry

but, sleeping all the time, moody, hair falling out, cold hands and feet are

not normal for a 35 year old. Along with other things I won’t

mention!!!

Keep a close

eye on yourself and don’t let a doctor dictate what quality of life you

want to have. If you are willing to deal with some of the things that go

along with ectomys then I would look to get a second opinion. There

are plenty of people on this board that I’m sure would be willing to talk

to you about it!! I’m sure those who read your post will chime in at some

point.

Take care of

you, only you know your body best and what it needs.

C Warren

Co-Founder

www.achalasia.us

From: achalasia [mailto:achalasia ]

On Behalf Of dromangirl

Sent: Saturday, September 09, 2006 11:40 PM

achalasia

Subject: I feel lost

I thought I knew all I could know about A but it seems that

since I

have joined this group I feel overwhelmed and quite in the dark

about a lot of things.

I have had A since birth and I am 43 yrs old. My doctor says he does

not want to do an esophagectomy unless I am at " death's door " Of

course he used different words. He also said that my quality of life

would change drastically. I am wondering is this because of the

length of time I have had A and also the fact that I have had 2

Heller Myotomies because from what I've read others who have had

the esophagectomy seem to be recovering fine.

I do feel sick all the time. I have the chest pain, spasms, choking

during the night and severe acid reflux. I cannot eat if I am going

out and I cant eat too late because it would be a difficult night. I

am weak, fatigued and have shortness of breath. I can not walk very

far without having to stop to catch my breath. I become shaky a lot

(hypoglycemic?) Because of the lack of sleeping and eating my

processing has slowed down and I feel that I am forgetiing things a

lot more. I developed anemia and I get dizzy and nauseaus a lot.

I was a teacher for eleven years and have had to stop due to these

symptoms.

I have a diverticulum the size of an egg that has to be checked

every 6 months during my laparoscopy and biopsy. AND recently I have

developed other conditions which have nothing to do with my A but do

not help the situation.

I read your stories and feel like I am not as strong as others who

live with A.

There is so much to this disease that I can not function as normally

as you guys. What's wrong?

I'm both embarrased and frightened.

I am currently on long term disability and my family doctor

recommneded I go for social secutrity disability benefits He even

said that he would help out with all the paper work.

I have lost 43 lbs in 2 months without trying.

I have lived with A all my llife but this time around it is

different I feel my body progressively getting worse.

Am I being a big baby?

I have always thought of myself as strong but lately feel very weak

and wussy.

What's wrong? I am secheduled for a biopsy in a few weeks . I wonder

if they are going to find something because I feel different. Let me

add that due to not eatiing or sleeping and constant vomitting my

teeth have been falling out and my hair as well.

Okay this will be the last of my whining. Thank goodness I have

somewhere to vent and share my irrational fears lol:)

 

Messenger with Voice. Make

PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

>

> I thought I knew all I could know about A but it seems that since I

> have joined this group I feel overwhelmed and quite in the dark

> about a lot of things.

> I have had A since birth and I am 43 yrs old.

Hey Debbie - sorry you're in such a bad place. Although my A has

never been to such the extreme, I can still relate on a lot of levels

and I truly feel for you.

I am curious about the A since birth. I don't think there's ever been

anyone here who has had it since birth. How did they know? How have

you managed all that time. I started having problems at age 12 and

was told then that I was extremely rare to be so young. I look at my

little ones, ages 4 and 1 1/2 and I can't even imagine. I almost want

to cry if they just vomit from the flu.

How old were you when you had your first dilation and/or surgery?

HOpe you don't mind all the grilling, I'm just curious.

Happy Swallowing!

- in Va.

[Guest guest]

-- RE: I feel lost

Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian.

o persuade me to try again.

I also have been to NY Hospitals Can't find a DR Now to DR Dempsey At Temple this Thursday I need help like Now

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

I was told that it was congenital something that I was born with

Whether that is common or not ... I don't know but that's what I was

told

> >

> > I thought I knew all I could know about A but it seems that since

I

> > have joined this group I feel overwhelmed and quite in the dark

> > about a lot of things.

> > I have had A since birth and I am 43 yrs old.

>

> Hey Debbie - sorry you're in such a bad place. Although my A has

> never been to such the extreme, I can still relate on a lot of

levels

> and I truly feel for you.

> I am curious about the A since birth. I don't think there's ever

been

> anyone here who has had it since birth. How did they know? How have

> you managed all that time. I started having problems at age 12 and

> was told then that I was extremely rare to be so young. I look at

my

> little ones, ages 4 and 1 1/2 and I can't even imagine. I almost

want

> to cry if they just vomit from the flu.

> How old were you when you had your first dilation and/or surgery?

>

> HOpe you don't mind all the grilling, I'm just curious.

>

> Happy Swallowing!

> - in Va.

>

[Guest guest]

I will give you the name of the doctor I saw at NY presbyterian when I find my planner yikes;) Bartolino <jfbartolino@...> wrote: -- RE: I feel lost Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian. o persuade me to try again. I also have been to NY Hospitals Can't find a DR Now to DR Dempsey At Temple this Thursday I need help like Now Stay in the know. Pulse on the new .com. Check it out.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

:

You are seeing Dr. Dempsey this Thursday?

In a message dated 9/11/2006 4:54:14 P.M. Eastern Daylight Time, jfbartolino@... writes:

Dr Fowler????

-- RE: I feel lost

Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian.

o persuade me to try again.

I also have been to NY Hospitals Can't find a DR Now to DR Dempsey At Temple this Thursday I need help like Now

Stay in the know. Pulse on the new .com. Check it out.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Cold hands and hair falling out are also symptoms of thyroid problems. An endocronologist would be abe to run the right tests on your thyroid to find out if this is a possibility for you. le Warren <juliecwarren@...> wrote: No problem! I just hope they find the cause soon, I don’t believe I would be to attractive bald!! LOL. Plus its starting to embarrass me some. I go

to the new doc in October to see if they can help figure this out! C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of debbie romanSent: Sunday, September 10, 2006 10:52 PMachalasia Subject: RE: I feel

lost Oh my gosh Thank you It's good to know that I am not the only one who gets cold hands and feet and hair falling out. I am always asking someone to turn down the air conditioner and I walk around with a sweater in 90 plus weather. I wish you weren't going through that but It feels good to know that I am not alone and that I am not acting like a big baby! Thanks I hate being tired and sleepy all the time too Warren <juliecwarrencomcast (DOT) net> wrote: You are not a big baby!!! This disease can be debilitating, as I very well know. At my worst time I was sick constantly, choking at night, lost 35 lbs was down to 97lbs at my lowest, was malnourished, had NO energy, was in and out of my docs office every other day, in and out of the hospital for rehydration. If I ever get this bad again, I will go for disability and have an ectomy done. That time of my life was not pretty, so I know what your going through. Letting my body get to that point has caused long term problems with my immune system and other things, to where now I function, but my system just can’t take exertion or being sick. I still to this day eat high calorie foods and sleep a lot, although the sleeping we think has some to do with my thyroid going south on me along with a lot of the other symptoms and the fact that all the women in my family have thyroid

problems start around their later 30s. Just like my thyroid issue, they keep saying I’m in the normal range!! Normal for who? You? My system is so sensitive now that low for someone else is bottomed out for me. I am going to go to an endocrinologist now, since my regular doc despite all my symptoms says I’m “normal”. Sorry but, sleeping all the time, moody, hair falling out, cold hands and feet are not normal for a 35 year old. Along with other things I won’t mention!!! Keep a close eye on yourself and don’t let a doctor dictate what quality of life you want to have. If you are willing to deal with some of the things that go along with ectomys then I would look to get a second opinion. There are plenty of people on this board that

I’m sure would be willing to talk to you about it!! I’m sure those who read your post will chime in at some point. Take care of you, only you know your body best and what it needs. C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of

dromangirlSent: Saturday, September 09, 2006 11:40 PMachalasia Subject: I feel lost I thought I knew all I could know about A but it seems that since I have joined this group I feel overwhelmed and quite in the dark about a lot of things. I have had A since birth and I am 43 yrs old. My doctor says he does not want to do an esophagectomy unless I am at "death's door" Of course he used different words. He also said that my quality of life would change drastically. I am wondering is this because of the length of time I have had A and also the fact that I have had 2 Heller Myotomies because from what I've read others who have had the esophagectomy seem to be recovering fine.I do feel sick all the time. I have the chest pain, spasms,

choking during the night and severe acid reflux. I cannot eat if I am going out and I cant eat too late because it would be a difficult night. I am weak, fatigued and have shortness of breath. I can not walk very far without having to stop to catch my breath. I become shaky a lot (hypoglycemic?) Because of the lack of sleeping and eating my processing has slowed down and I feel that I am forgetiing things a lot more. I developed anemia and I get dizzy and nauseaus a lot.I was a teacher for eleven years and have had to stop due to these symptoms.I have a diverticulum the size of an egg that has to be checked every 6 months during my laparoscopy and biopsy. AND recently I have developed other conditions which have nothing to do with my A but do not help the situation. I read your stories and feel like I am not as strong as others who live with A. There is so much to this disease that I can not

function as normally as you guys. What's wrong? I'm both embarrased and frightened.I am currently on long term disability and my family doctor recommneded I go for social secutrity disability benefits He even said that he would help out with all the paper work.I have lost 43 lbs in 2 months without trying. I have lived with A all my llife but this time around it is different I feel my body progressively getting worse. Am I being a big baby?I have always thought of myself as strong but lately feel very weak and wussy.What's wrong? I am secheduled for a biopsy in a few weeks . I wonder if they are going to find something because I feel different. Let me add that due to not eatiing or sleeping and constant vomitting my teeth have been falling out and my hair as well. Okay this will be the last of my whining. Thank goodness I have somewhere to vent and share my irrational fears

lol:) Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

That’s who I’m seeing next month, to get to the

bottom of it. 

C Warren

Co-Founder

www.achalasia.us

From: achalasia

[mailto:achalasia ] On Behalf Of le Beech

Sent: Monday, September 11, 2006 2:12 PM

achalasia

Subject: RE: I feel lost

Cold hands and hair falling out are also symptoms of thyroid

problems. An endocronologist would be abe to run the right tests on

your thyroid to find out if this is a possibility for you.

le

Warren <juliecwarren@...>

wrote:

No

problem! I just hope they find the cause soon, I don’t believe I

would be to attractive bald!! LOL. Plus its starting to embarrass me

some. I go to the new doc in October to see if they can help figure this

out!

C Warren

Co-Founder

www.achalasia.us

From: achalasia [mailto:achalasia ]

On Behalf Of debbie roman

Sent: Sunday, September 10, 2006 10:52 PM

achalasia

Subject: RE: I feel lost

Oh my gosh Thank you

It's good to know that I am not the only one who gets

cold hands and feet and hair falling out. I am always asking someone to

turn down the air conditioner and I walk around with a sweater in 90 plus

weather.

I wish you weren't going through that but It feels

good to know that I am not alone and that I am not acting like a big baby!

Thanks

I hate being tired and sleepy all the time too

Warren <juliecwarren@...>

wrote:

You are not a

big baby!!! This disease can be debilitating, as I very well know.

At my worst time I was sick constantly, choking at night, lost 35 lbs was

down to 97lbs at my lowest, was malnourished, had NO energy, was in and out of

my docs office every other day, in and out of the hospital for rehydration. If

I ever get this bad again, I will go for disability and have an ectomy

done. That time of my life was not pretty, so I know what your going

through. Letting my body get to that point has caused long term problems

with my immune system and other things, to where now I function, but my system

just can’t take exertion or being sick. I still to this day eat

high calorie foods and sleep a lot, although the sleeping we think has some to

do with my thyroid going south on me along with a lot of the other symptoms and

the fact that all the women in my family have thyroid problems start around

their later 30s.

Just like my

thyroid issue, they keep saying I’m in the normal range!! Normal

for who? You? My system is so sensitive now that low for someone else is

bottomed out for me. I am going to go to an endocrinologist now, since my

regular doc despite all my symptoms says I’m “normal”. Sorry

but, sleeping all the time, moody, hair falling out, cold hands and feet are

not normal for a 35 year old. Along with other things I won’t

mention!!!

Keep a close

eye on yourself and don’t let a doctor dictate what quality of life you

want to have. If you are willing to deal with some of the things that go

along with ectomys then I would look to get a second opinion. There

are plenty of people on this board that I’m sure would be willing to talk

to you about it!! I’m sure those who read your post will chime in at some

point.

Take care of

you, only you know your body best and what it needs.

C Warren

Co-Founder

www.achalasia.us

From: achalasia [mailto:achalasia ]

On Behalf Of dromangirl

Sent: Saturday, September 09, 2006 11:40 PM

achalasia

Subject: I feel lost

I thought I knew all I could know about A but it seems that

since I

have joined this group I feel overwhelmed and quite in the dark

about a lot of things.

I have had A since birth and I am 43 yrs old. My doctor says he does

not want to do an esophagectomy unless I am at " death's door " Of

course he used different words. He also said that my quality of life

would change drastically. I am wondering is this because of the

length of time I have had A and also the fact that I have had 2

Heller Myotomies because from what I've read others who have had

the esophagectomy seem to be recovering fine.

I do feel sick all the time. I have the chest pain, spasms, choking

during the night and severe acid reflux. I cannot eat if I am going

out and I cant eat too late because it would be a difficult night. I

am weak, fatigued and have shortness of breath. I can not walk very

far without having to stop to catch my breath. I become shaky a lot

(hypoglycemic?) Because of the lack of sleeping and eating my

processing has slowed down and I feel that I am forgetiing things a

lot more. I developed anemia and I get dizzy and nauseaus a lot.

I was a teacher for eleven years and have had to stop due to these

symptoms.

I have a diverticulum the size of an egg that has to be checked

every 6 months during my laparoscopy and biopsy. AND recently I have

developed other conditions which have nothing to do with my A but do

not help the situation.

I read your stories and feel like I am not as strong as others who

live with A.

There is so much to this disease that I can not function as normally

as you guys. What's wrong?

I'm both embarrased and frightened.

I am currently on long term disability and my family doctor

recommneded I go for social secutrity disability benefits He even

said that he would help out with all the paper work.

I have lost 43 lbs in 2 months without trying.

I have lived with A all my llife but this time around it is

different I feel my body progressively getting worse.

Am I being a big baby?

I have always thought of myself as strong but lately feel very weak

and wussy.

What's wrong? I am secheduled for a biopsy in a few weeks . I wonder

if they are going to find something because I feel different. Let me

add that due to not eatiing or sleeping and constant vomitting my

teeth have been falling out and my hair as well.

Okay this will be the last of my whining. Thank goodness I have

somewhere to vent and share my irrational fears lol:)

Messenger with Voice. Make

PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Dr Fowler????

-- RE: I feel lost

Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian.

o persuade me to try again.

I also have been to NY Hospitals Can't find a DR Now to DR Dempsey At Temple this Thursday I need help like Now

Stay in the know. Pulse on the new .com. Check it out.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Yes I was suppose to see him the day YOU saw him Remember He cancelled with me 2 days before he saw you ?? I was suppose to see him the very hour you saw him .... I want surgery NOW .... let me back up My son in law has throat cancer And needs surgery I was going to wait till he got settled But I am doing soooooooo bad I need help now I did go to a few Drs But they scared me with their way of handling things My "E" burns most to the time right now to my toes Ensure is getting too me I feel GASSY If that's a word I am tired Crappy Nausea I feel like hell most of the time Now I have vented.......... .... Hey you had nothing to do with him not seeing me His Sec said he was unavailable till the 14th

-- RE: I feel lost

Hi I live in New York, Brooklyn to be exact and have been to a few doctors in Lutheran Medical Center , Mount Sinai and recently New york Presbyterian.

o persuade me to try again.

I also have been to NY Hospitals Can't find a DR Now to DR Dempsey At Temple this Thursday I need help like Now

Stay in the know. Pulse on the new .com. Check it out.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

I was told the same thing michelle, congenital. I know from what my

parents have told me how I was when I was young, but never realized

anything. It wasn't until I was 15 that the doctors diagnosed me

with A. But what I always wondered is what caused it? My mother

and I wondered if there was any connection with a drug she took when

she was pregnant with me. Benedictine I think was the name of it.

Did any of your parents mentioned taking this drug? Just wondering.

> > >

> > > I thought I knew all I could know about A but it seems that

since

> I

> > > have joined this group I feel overwhelmed and quite in the

dark

> > > about a lot of things.

> > > I have had A since birth and I am 43 yrs old.

> >

> > Hey Debbie - sorry you're in such a bad place. Although my A has

> > never been to such the extreme, I can still relate on a lot of

> levels

> > and I truly feel for you.

> > I am curious about the A since birth. I don't think there's ever

> been

> > anyone here who has had it since birth. How did they know? How

have

> > you managed all that time. I started having problems at age 12

and

> > was told then that I was extremely rare to be so young. I look

at

> my

> > little ones, ages 4 and 1 1/2 and I can't even imagine. I almost

> want

> > to cry if they just vomit from the flu.

> > How old were you when you had your first dilation and/or surgery?

> >

> > HOpe you don't mind all the grilling, I'm just curious.

> >

> > Happy Swallowing!

> > - in Va.

> >

>

[Guest guest]

What was it used for????

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of bcsk8r

Sent: Monday, September 11, 2006 8:58 PM

achalasia

Subject: Re: I feel lost

I was told the same thing michelle, congenital.

I know from what my

parents have told me how I was when I was young, but never realized

anything. It wasn't until I was 15 that the doctors diagnosed me

with A. But what I always wondered is what caused it? My mother

and I wondered if there was any connection with a drug she took when

she was pregnant with me. Benedictine I think was the name of it.

Did any of your parents mentioned taking this drug? Just wondering.

> > >

> > > I thought I knew all I could know about A but it seems that

since

> I

> > > have joined this group I feel overwhelmed and quite in the

dark

> > > about a lot of things.

> > > I have had A since birth and I am 43 yrs old.

> >

> > Hey Debbie - sorry you're in such a bad place. Although my A has

> > never been to such the extreme, I can still relate on a lot of

> levels

> > and I truly feel for you.

> > I am curious about the A since birth. I don't think there's ever

> been

> > anyone here who has had it since birth. How did they know? How

have

> > you managed all that time. I started having problems at age 12

and

> > was told then that I was extremely rare to be so young. I look

at

> my

> > little ones, ages 4 and 1 1/2 and I can't even imagine. I almost

> want

> > to cry if they just vomit from the flu.

> > How old were you when you had your first dilation and/or surgery?

> >

> > HOpe you don't mind all the grilling, I'm just curious.

> >

> > Happy Swallowing!

> > - in Va.

> >

>