first post

[Guest guest]

Your total T is WAY too low. Mine was 360 before starting treatment

and I was a wreck.

Armyguy

> Hello all this is my first time posting but i've been reading the

> posts in this group for quite some time now. I would just like to

> tell my story and explain how I got myself into this. About 5

months

> ago i used the drug propecia (1mg/day) to try and slow my

hairloss.

> I also used the herbal drug saw palmetto (1500mg/day) to inhibit

DHT

> as well. (which i only took for 2 weeks) I used a combination of

> these drugs for only about 1 month and got sides that have yet to

> leave. It has been almost 4 months. Currently i am battling ED

issues

> which is my biggest concern. This was never a problem for me b/c

i

> am only 26yrs old...peak age for sex. I've been to many doctors

and

> took many blood tests but cant seem to find anything wrong. I

have

> posted my most recent results here hoping I can get some advice

and

> insight from you all.

>

> Total T 391 Range 260-1000 ng/dl

>

> Free T % 1.9 Range 1.0-2.7

>

> Free T 76.2 Range 50-210 mIU/ml

>

> T4,Free 2.1 Range 0.8-2.7 ng/dl

> Direct Dialysis

>

> LH 5.6 Range 1.5-9.3 mIU/ml

>

> FSH 7.8 Range 1.4-18.1 mIU/ml

>

> Estradiol <32 Range <52 pg/ml

>

> Estrone 26 Range 15-65 ng/dl

> Serum

>

> Prolactin 9.1 Range 2.0-18.0

>

> DHT 46 Range 25-75 ng/dl

>

> Prolactin and DHT was done in a previous blood test but i have to

say

> none of these results have changed much from my last test. My T

> seems kinda low but i am hesitant to try anymore hormonal

treatments

> due to my distrust in medicine these days. Does anybody see

anything

> strange on the test? Thanks for all your help!

[Guest guest]

> Question to the group: Does anyone know if propecia-affected T

> might eventually get back on track without treatment? If so, might

> it be better to get along on Viagra until then?

I'm sure it is possible, but there are no guarantees that it will

happen in a specific case.

> > Hello all this is my first time posting but i've been reading

the

> > posts in this group for quite some time now. I would just like

to

> > tell my story and explain how I got myself into this. About 5

> months

> > ago i used the drug propecia (1mg/day) to try and slow my

> hairloss.

> > I also used the herbal drug saw palmetto (1500mg/day) to

> inhibit DHT

> > as well. (which i only took for 2 weeks) I used a combination

of

> > these drugs for only about 1 month and got sides that have yet

> to

> > leave. It has been almost 4 months. Currently i am battling ED

> issues

> > which is my biggest concern. This was never a problem for

> me b/c i

> > am only 26yrs old...peak age for sex. I've been to many doctors

> and

> > took many blood tests but cant seem to find anything wrong. I

> have

> > posted my most recent results here hoping I can get some

> advice and

> > insight from you all.

> >

> > Total T 391 Range 260-1000 ng/dl

> >

> > Free T % 1.9 Range 1.0-2.7

> >

> > Free T 76.2 Range 50-210 mIU/ml

> >

> > T4,Free 2.1 Range 0.8-2.7 ng/dl

> > Direct Dialysis

> >

> > LH 5.6 Range 1.5-9.3 mIU/ml

> >

> > FSH 7.8 Range 1.4-18.1 mIU/ml

> >

> > Estradiol <32 Range <52 pg/ml

> >

> > Estrone 26 Range 15-65 ng/dl

> > Serum

> >

> > Prolactin 9.1 Range 2.0-18.0

> >

> > DHT 46 Range 25-75 ng/dl

> >

> > Prolactin and DHT was done in a previous blood test but i have

> to say

> > none of these results have changed much from my last test.

> My T

> > seems kinda low but i am hesitant to try anymore hormonal

> treatments

> > due to my distrust in medicine these days. Does anybody see

> anything

> > strange on the test? Thanks for all your help!

[Guest guest]

I have almost no libido, loss of sensitivity and weak/limp

erections. Will the clomiphene stim test cause infertility? I am

hesitant to try any hormone therapy because one day i would still

like to have children.

> > Hello all this is my first time posting but i've been reading the

> > posts in this group for quite some time now. I would just like

to

> > tell my story and explain how I got myself into this. About 5

months

> > ago i used the drug propecia (1mg/day) to try and slow my

hairloss.

> > I also used the herbal drug saw palmetto (1500mg/day) to inhibit

DHT

> > as well. (which i only took for 2 weeks) I used a combination of

> > these drugs for only about 1 month and got sides that have yet to

> > leave. It has been almost 4 months. Currently i am battling ED

issues

> > which is my biggest concern. This was never a problem for me b/c

i

> > am only 26yrs old...peak age for sex. I've been to many doctors

and

> > took many blood tests but cant seem to find anything wrong. I

have

> > posted my most recent results here hoping I can get some advice

and

> > insight from you all.

> >

> > Total T 391 Range 260-1000 ng/dl

> >

> > Free T % 1.9 Range 1.0-2.7

> >

> > Free T 76.2 Range 50-210 mIU/ml

> >

> > T4,Free 2.1 Range 0.8-2.7 ng/dl

> > Direct Dialysis

> >

> > LH 5.6 Range 1.5-9.3 mIU/ml

> >

> > FSH 7.8 Range 1.4-18.1 mIU/ml

> >

> > Estradiol <32 Range <52 pg/ml

> >

> > Estrone 26 Range 15-65 ng/dl

> > Serum

> >

> > Prolactin 9.1 Range 2.0-18.0

> >

> > DHT 46 Range 25-75 ng/dl

> >

> > Prolactin and DHT was done in a previous blood test but i have to

say

> > none of these results have changed much from my last test. My T

> > seems kinda low but i am hesitant to try anymore hormonal

treatments

> > due to my distrust in medicine these days. Does anybody see

anything

> > strange on the test? Thanks for all your help!

[Guest guest]

Yes that was one of the tests i had missed..i am going to ask for it

next time i see my endo. Ive thought about many things regarding T

therapy and would like to only use that if all else fails. I would

not like to be sterile cause i do like to have children someday. Not

to mention the fact that i would have to do T therapy for the rest of

my life! This freakin sucks, it seems like to get better u always

have to give something up. So do u have any recommendations on

natural T boosters? Thanks!

>

> T is somewhat low, so is your Free T.

> I don't see a SHBG test. The answer may lie in high levels there.

It

> binds up free T.

>

> Be aware that if you seek to push up your testosterone levels you

> should likely be looking at methods that stimulate natural

production

> NOT Testosterone replacement.

>

> Taking supplemental T will shut down your natural production. If

done

> for too long a time you will become permanently sterile and unable

to

> produce natural testosterone. You will be taking the supplemental T

> for life.

>

> At your age, you may still want to have kids. Put these facts into

the

> mix for your decisions.

[Guest guest]

Assessing ED while having low libido is difficult. You can't really

tell what the quality of your erections would be if you had a normal

libido.

Clomiphene stim test is only for a week or so. If anything, it will

improve your fertility.

Brad

> > > Hello all this is my first time posting but i've been reading the

> > > posts in this group for quite some time now. I would just like

> to

> > > tell my story and explain how I got myself into this. About 5

> months

> > > ago i used the drug propecia (1mg/day) to try and slow my

> hairloss.

> > > I also used the herbal drug saw palmetto (1500mg/day) to inhibit

> DHT

> > > as well. (which i only took for 2 weeks) I used a combination of

> > > these drugs for only about 1 month and got sides that have yet to

> > > leave. It has been almost 4 months. Currently i am battling ED

> issues

> > > which is my biggest concern. This was never a problem for me b/c

> i

> > > am only 26yrs old...peak age for sex. I've been to many doctors

> and

> > > took many blood tests but cant seem to find anything wrong. I

> have

> > > posted my most recent results here hoping I can get some advice

> and

> > > insight from you all.

> > >

> > > Total T 391 Range 260-1000 ng/dl

> > >

> > > Free T % 1.9 Range 1.0-2.7

> > >

> > > Free T 76.2 Range 50-210 mIU/ml

> > >

> > > T4,Free 2.1 Range 0.8-2.7 ng/dl

> > > Direct Dialysis

> > >

> > > LH 5.6 Range 1.5-9.3 mIU/ml

> > >

> > > FSH 7.8 Range 1.4-18.1 mIU/ml

> > >

> > > Estradiol <32 Range <52 pg/ml

> > >

> > > Estrone 26 Range 15-65 ng/dl

> > > Serum

> > >

> > > Prolactin 9.1 Range 2.0-18.0

> > >

> > > DHT 46 Range 25-75 ng/dl

> > >

> > > Prolactin and DHT was done in a previous blood test but i have to

> say

> > > none of these results have changed much from my last test. My T

> > > seems kinda low but i am hesitant to try anymore hormonal

> treatments

> > > due to my distrust in medicine these days. Does anybody see

> anything

> > > strange on the test? Thanks for all your help!

[Guest guest]

My doc ordered an shbg test some time after I started therapy. In my

case it was a bit low. I don't really see the point of this test.

What additional info will you have? Yes, an unusually high amount of

t might be bound to shbg. You already know how much free t and total

t you have because you've measured it. I suppose that if you wanted

to know how much is weakly bound and how much is shbg bound you could

get total t and bioavailable t and get at the same information.

What if you do the test and shbg is too high? What will you do about

it? I don't know of any means of directly manipulating the level of

shbg. A large number of things are purported to influence the level

of shbg. Chief among them are androgen and estrogen levels. So

presumably you can influence your level of shbg by manipulating your

hormone levels. Isn't this what you're going to do anyway? Pick a

mode of treatment, boost your t level while monitoring your estrogen

level, right? I don't see how the results of a shbg test will affect

your choice of treatment.

Good luck,

Brad

> Yes that was one of the tests i had missed..i am going to ask for it

> next time i see my endo. Ive thought about many things regarding T

> therapy and would like to only use that if all else fails. I would

> not like to be sterile cause i do like to have children someday. Not

> to mention the fact that i would have to do T therapy for the rest of

> my life! This freakin sucks, it seems like to get better u always

> have to give something up. So do u have any recommendations on

> natural T boosters? Thanks!

>

>

> >

> > T is somewhat low, so is your Free T.

> > I don't see a SHBG test. The answer may lie in high levels there.

> It

> > binds up free T.

> >

> > Be aware that if you seek to push up your testosterone levels you

> > should likely be looking at methods that stimulate natural

> production

> > NOT Testosterone replacement.

> >

> > Taking supplemental T will shut down your natural production. If

> done

> > for too long a time you will become permanently sterile and unable

> to

> > produce natural testosterone. You will be taking the supplemental T

> > for life.

> >

> > At your age, you may still want to have kids. Put these facts into

> the

> > mix for your decisions.

[Guest guest]

Armyguy,

My most recent one was 117 on patches. No wonder I feel like crap a

good part of the time.

Mark

> Your total T is WAY too low. Mine was 360 before starting treatment

> and I was a wreck.

>

> Armyguy

>

[Guest guest]

No wonder.

I am telling you. Get your T level to 800+ consistently and your E2

at a normal level and it is a world of difference.

Armyguy

> > Your total T is WAY too low. Mine was 360 before starting

treatment

> > and I was a wreck.

> >

> > Armyguy

> >

[Guest guest]

On Tue, 11 May 2004 23:22:03 -0000, you wrote:

>

>Yes that was one of the tests i had missed..i am going to ask for it

>next time i see my endo. Ive thought about many things regarding T

>therapy and would like to only use that if all else fails. I would

>not like to be sterile cause i do like to have children someday. Not

>to mention the fact that i would have to do T therapy for the rest of

>my life! This freakin sucks, it seems like to get better u always

>have to give something up. So do u have any recommendations on

>natural T boosters? Thanks!

Before you start therapy - should it prove necessary - you can collect

and freeze sperm. So you still can have kids.

SOme of what you posted sounds like you may have primary hypogonadism,

i.e., the balls are not capable of making more T. If that proves true

its doubtful " boosters " will help. But an hCG test should tell if

they're capable of more production.

Hang in there.

[Guest guest]

Yup, I second that. Without talking to people who have got well hope

would be a lot harder to come by.

Speaking of helping others, as a result of all my health problems I

am hoping to work on a MPH when I get feeling better. Hopefully I

can take that and put it to use helping people who are sick, or help

people to keep from getting sick. If you don't have your health,

nothing else really matters.

Mark

> Thanks for all the support guys, it's truely guys like you who make

> this an easier world for people like me, not knowing where to turn,

> when doctors haven't been helpful.

>

> When I do recover, I will help others as well.

>

> Thanks!!!

>

[Guest guest]

Glad you decided to post, Carol. Welcome!

Sorry that you've gone so long without getting good answers about your

diagnoses. I do indeed know your frustration.

We have several members who have used or are currently using Remicade

(infliximab) safely and successfully to treat their RA.

You didn't really say why MS was suspected, but caution before beginning

any of the anti-TNF therapies like Remicade is warranted in those with

MS or MS-like symptoms.

There have been several reports of neurological adverse events

suggestive of a demyelination disorder associated with both Remicade and

Enbrel.

Also, if you believe you have lupus rather than rheumatoid arthritis, at

this time, Remicade is not a recommend therapy for lupus. Since there

have been reports of patients newly developing antibodies commonly

associated with lupus and even some presenting with drug-induced lupus,

again, caution is strongly advised.

If one clearly has RA, Remicade is an excellent choice for a DMARD. It

should be used in conjunction with MTX in order to lessen the chances of

infusion reactions and the formation of antibodies to the Remicade

itself; Remicade plus MTX boosts the odds of Remicade's safety and

effectiveness.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] first post

>

> Hi everyone,

>

> I joined this list a long time ago, but have not been participating or

> reading (sorry). I guess I have just been overwhelmed with the amount

> of uncertainty I was always experiencing with getting a clear

> diagnosis in the past. One doc said one thing, another claimed

> something else, and another said something different again. I'm sure

> many of you know what I mean.

>

> With " Probable MS " lingering in my life for so many years, and then

> the Rheumatologists telling me more different theories (some that

> there was " nothing " wrong with me at all), I have been reluctant to

> trust doctors. I trust few anyway.

>

> So at my last Rheumo appt, my doc said I should be on Remicade. He

> sent me home with a video and I have to watch it. I told him if my GI

> agrees with him, I would seriously consider it. (I also have Colitis.)

>

> At this point MS got ruled out based on my last MRI (all clear), and

> my blood work points mostly toward Lupus. I also have Arthritis.

> Rheumo doc says RA, but I don't have the positive RF. I have that

> C-Reactive Protein. My ANA is always positive for Lupus. The arthritis

> is obvious, and I can not really walk. I've had it since I was a kid.

>

> So, is anyone here on Remicade and if so, can you tell me anything

> about it? Sounds scary.

[Guest guest]

In a message dated 14/08/2004 13:19:59 Central Standard Time,

artczar8@... writes:

> Considering Remicade is a very big deal for me. I like to learn as

> much as I can and consider the possible side effects. The video the

> doc gave me was kinda lame. It did not go into all the possible

> negatives and what can be done if any should occur. I need a mountain

> of reassurance in order to feel safe. I want the cake and be able to

> eat it and all that. Probably my denial talking now.

>

> Thanks for the words. I'm still trying to read everyone's posts.

>

> Carol

>

Hi Carol

I have been on Remicade for about two years. I was very afraid of it

initially. I'm a nurse, so I see patients with bad RA but also with med side

effects....so I did a lot of research. Do you have any specific questions?

is

the queen of web info, she can answer anything with a study, I can answer from

personal experience. Cary

[Guest guest]

In a message dated 17/08/2004 21:32:08 Central Standard Time, Birdijo@...

writes:

> is

> the queen of web info, she can answer anything with a study, I can answer

> from

> personal experience.

My apologies-

Due to a " brain fart " , I forgot to mention a......actually a and

are co-queens!!!! Cary

[Guest guest]

Cary,

I am also still considering one of the new drugs but the side effects seem

to be worse than not taking the drug. When I am in a flare, I feel I should

take something else, but it usually passes quickly and I do well on the

antibiotic treatment I've been on for 12 years.

My doctor even feels it is a catch 22. I don't want to have damaged joints

or deformities but I also don't want to worry about lymphoma or dying if I

get an infection - I've heard of someone with a sinus infection who didn't

even realize she had one and died on enbrel.

Thanks.

ette

>

[Guest guest]

Hi ette

The side effects that are possible with these drugs are very intimidating.

Then again, going from working 2 nursing jobs to being in a wheelchair on

disability is also pretty darned intimidating. I try to keep in mind what the

alternative is. I have not had ANY side effects from Remicade. I did from

Arava.

I had some diarrhea initially with Plaquenil but it went away. So I've been

lucky in that respect. I think it is important to compare apples to apples

here.....what will happen if I'm not on a DMARD? I won't be healthy. My RA

will progress. The risk of lymphoma is higher with RA regardless of what meds

you are on, that's why it's unclear whether that was truly a side

effect/adverse reaction or the RA higher risk showing up. Some on this list

have had

serious respiratory infections on Remicade. Before I started the Remicade my

hands

were so bad I couldn't make a fist or straighten them out. Inserting an IV

was physically impossible. I couldn't spike an IV bag or open med packets.

And forget lifting patients. So compared to that, some diarrhea wasn't a bad

trade off. It's a difficult, personal decision only you can make, although

sometimes the illness makes it for you. Good Luck, please let us know what you

end up doing. The more info we share with each other, the better it is for all

of us! Cary

In a message dated 18/08/2004 13:14:45 Central Standard Time,

wport@... writes:

> Cary,

>

> I am also still considering one of the new drugs but the side effects seem

> to be worse than not taking the drug. When I am in a flare, I feel I should

> take something else, but it usually passes quickly and I do well on the

> antibiotic treatment I've been on for 12 years.

>

> My doctor even feels it is a catch 22. I don't want to have damaged joints

> or deformities but I also don't want to worry about lymphoma or dying if I

> get an infection - I've heard of someone with a sinus infection who didn't

> even realize she had one and died on enbrel.

>

> Thanks.

> ette

>

[Guest guest]

LOL! I've never been called a co-queen before. Do we have to share some

kind of crown? Just for the record, has far surpassed me in her

knowledge. I still tend to read the alternative articles and nutrition.

Together we make a great team.

a

> In a message dated 17/08/2004 21:32:08 Central Standard Time, Birdijo@...

> writes:

>

>

>> is

>> the queen of web info, she can answer anything with a study, I can answer

>> from

>> personal experience.

>

> My apologies-

> Due to a " brain fart " , I forgot to mention a......actually a and

> are co-queens!!!! Cary

>

[Guest guest]

In a message dated 18/08/2004 21:56:01 Central Standard Time,

a54@... writes:

> Together we make a great team.

> a

>

Absolutely true! I know I appreciate you guys and this list more than I can

say. Cary

[Guest guest]

Thanks. I am only 33 and I have been dealing with this for ten yeas now. I hope this is the last surgery I have to go though. The doctos are saying the next step is total removal. I really want to prevent that. Thanks again and I will let you all know how thinhs go.

[Guest guest]

Hello there and welcome. My situation is only similar in that I

had my myotomy lapro in

2002 and apparently have a fairly severe case of Achalasia

that has gotten worse. I’ve

got an endoscopy scheduled for the 17th

then I find out my next step. Good

luck with the second myotomy and hang in there. The more I learn about achalasia I find that obviously achalasia

never goes away. We just have to

hang in there and do what we can to find as much relief as possible that lasts

as long as possible. I’m only

36 so I expect to work on my achalasia for many years

to come. I hope I find long long stretches on relief before I need more procedures/surgery. It sounds like you are well versed in

the treatment of achalasia so I can only offer you my

support and prayers. Take care and

keep us informed on your progress and hopefully long term success of this latest

myotomy.

Beverly

First post

Hello all I am new in here. I have had

several streches w/ botox

done from 1993 till about 2003. I then had

the myotomy done lapro.

The surgeon I had has delt with this problem

before and was

recomended by my GI doc. Now a year and a

half later I am going in

for my second myotomy this time they want to do it

open. This might

happen on the 9th of this month. There is

not many options left for

me right now so I hope this works this time.

I have a sever case of

Achalasia and it does not seem to be getting any

better.

[Guest guest]

Dawn,

Sorry to hear about your stomach problems

but It’s good to hear you’ve found relative relief. I had my myotomy

in 2002 and since my stomach was accidentally nicked I too was in the hospital

for 6 days with tubes and didn’t see my then 1 year old son until I got

home – tough on me but we picked up again after a day or so. I am currently having severe difficulty

swallowing several (2-10) times a month. I expect that I’ll end up with a dilation but am just getting started on that analysis –

endoscopy is on the 17th. I’ve had one pregnancy since the

Heller but had a lot of trouble eating and only gained about 17 pounds. My 7lb 6oz daughter was and is great. I took the brunt of it and have regained

my weight. So though I have my

issues and problems I guess I’m doing okay considering.

I too worry about the long term since I am

only 36. It is encouraging to hear

that you haven’t thrown up in 11 years. Right now I can say I haven’t

thrown up in over 11 hours J.

Take care and here’s to many more problem free years.

Beverly

first post

I was diagnosed at 21. I am 34 now. I had a

Heller myotomy in 1993

at the Clev. Clinic by DR RICE. AAWWEESSOOMMEE!!!

I was in the hosp

for 6 days. Post surgery I have had 2 pneumatic

dilitaion and I do

ok. My stomach is now affected and I am on a low

bulk diet. I have

not thrown up in 11 years. I feel like my stomach

spazzes alot and I

am often bloated if I don't stick to my diet. I

haven't been to the

Cleve Clinic in 1 1/2 years. I use to feel like

the only one. Am

glad to read your posts.

I have had 2 normal pregnancies since my surgeries

and swallowed

great during them. Day to day can sometimes be a

struggle but I worry

more about long term effects.

dawn

[Guest guest]

I've also heard that A gives you a higher risk of cancer of the oesopaghus,

lung cancer, mouth cancer, and also might be a very early sign of

Alzheimer's.

Anyone else who has heard of this?

>From: " dawn " <rirey20@...>

>Reply-achalasia

>achalasia

>Subject: first post

>Date: Sat, 04 Dec 2004 19:01:22 -0000

>

>

>I was diagnosed at 21. I am 34 now. I had a Heller myotomy in 1993

>at the Clev. Clinic by DR RICE. AAWWEESSOOMMEE!!! I was in the hosp

>for 6 days. Post surgery I have had 2 pneumatic dilitaion and I do

>ok. My stomach is now affected and I am on a low bulk diet. I have

>not thrown up in 11 years. I feel like my stomach spazzes alot and I

>am often bloated if I don't stick to my diet. I haven't been to the

>Cleve Clinic in 1 1/2 years. I use to feel like the only one. Am

>glad to read your posts.

>I have had 2 normal pregnancies since my surgeries and swallowed

>great during them. Day to day can sometimes be a struggle but I worry

>more about long term effects.

>

>dawn

>

>

>

_________________________________________________________________

Is jouw domeinnaam nog vrij? http://hostbasket.msn.be/domains/index.asp

[Guest guest]

Beverly,

I guess that I am fortunate to not have thrown up in 11 years. I had my myotomy when my first born was one, but in 1993 they did not do the laproscopic way at one point I did not care if I died. I had a tremendous amount of chest pain post op. I feel like I can live a pretty normal life now. My oldest daughter says I do "a dance" to get my food down. At dinner I scratch my head or sit up super straight or pull out my bra to get food down. If I drink too much water I feel STUFFED even after a little food. Why do you think that you still throw up?? I find it harder to throw up even if I am sick. I have trouble burping too. Just in the past 2 years I have been able to burp- if I force it- and that seems to relieve my bloated stomach.. sometimes I take a laxative.....that helps move all my food faster through my stomach.. I had a study done on my stomach about 1 1/2 years ago and it really just

comfirmed what we already knew. It's super sluggish. I fasted for 10 hours and during one endoscopy the previous nights dinner was still in my stomach-- the dr. was really suprised.Well, I guess we just have to keep on keepin on!!!

Good Luck.Beverly <bevjames@...> wrote:

Dawn,

Sorry to hear about your stomach problems but It’s good to hear you’ve found relative relief. I had my myotomy in 2002 and since my stomach was accidentally nicked I too was in the hospital for 6 days with tubes and didn’t see my then 1 year old son until I got home – tough on me but we picked up again after a day or so. I am currently having severe difficulty swallowing several (2-10) times a month. I expect that I’ll end up with a dilation but am just getting started on that analysis – endoscopy is on the 17th. I’ve had one pregnancy since the Heller but had a lot of trouble eating and only gained about

17 pounds. My 7lb 6oz daughter was and is great. I took the brunt of it and have regained my weight. So though I have my issues and problems I guess I’m doing okay considering.

I too worry about the long term since I am only 36. It is encouraging to hear that you haven’t thrown up in 11 years. Right now I can say I haven’t thrown up in over 11 hours J.

Take care and here’s to many more problem free years.

Beverly

-----Original Message-----From: dawn [mailto:rirey20@...] Sent: Saturday, December 04, 2004 11:01 AMachalasia Subject: first post

I was diagnosed at 21. I am 34 now. I had a Heller myotomy in 1993 at the Clev. Clinic by DR RICE. AAWWEESSOOMMEE!!! I was in the hosp for 6 days. Post surgery I have had 2 pneumatic dilitaion and I do ok. My stomach is now affected and I am on a low bulk diet. I have not thrown up in 11 years. I feel like my stomach spazzes alot and I am often bloated if I don't stick to my diet. I haven't been to the Cleve Clinic in 1 1/2 years. I use to feel like the only one. Am glad to read your

posts. I have had 2 normal pregnancies since my surgeries and swallowed great during them. Day to day can sometimes be a struggle but I worry more about long term effects.dawn

[Guest guest]

Evita - early literature alluded to these things but now they don't think there is any more chance than any other person

Joan

first post>Date: Sat, 04 Dec 2004 19:01:22 -0000>>>I was diagnosed at 21. I am 34 now. I had a Heller myotomy in 1993>at the Clev. Clinic by DR RICE. AAWWEESSOOMMEE!!! I was in the hosp>for 6 days. Post surgery I have had 2 pneumatic dilitaion and I do>ok. My stomach is now affected and I am on a low bulk diet. I have>not thrown up in 11 years. I feel like my stomach spazzes alot and I>am often bloated if I don't stick to my diet. I haven't been to the>Cleve Clinic in 1 1/2 years. I use to feel like the only one. Am>glad to read your posts.>I have had 2 normal pregnancies since my surgeries and swallowed>great during them. Day to day can sometimes be a struggle but I worry>more about long term effects.>>dawn>>>_________________________________________________________________Is jouw domeinnaam nog vrij? http://hostbasket.msn.be/domains/index.asp

[Guest guest]

Evita wrote:

I've also heard that A gives you

a higher risk of cancer of the oesopaghus,

You can easily find studies that say that,

however there are reasons to question the conclusion. If you look at the

people that have been diagnosed with achalasia and then see how many of

them are later found to have cancer of the esophagus you will find more

of them become diagnosed with the cancer than a comparable group of

people with out achalasia, (about 5% more, according to some studies, but

other percentages in other studies). At first glance that seems to

support the conclusion. There is a problem though. Some people diagnosed

with achalasia actually have secondary achalasia, secondary to cancer.

They don't have idiopathic primary achalasia. So, though the cancer came

first it was not diagnosed until after the achalasia. Generally, the

cancer will become obvious sometime in about the next two years. My

understanding is that if you looked at how many develop the cancer in

later years the rate would looks about normal. The main way you can

decrease your chances of getting esophageal cancer is to not smoke or

drink alcohol.

My guess is that better testing for achalasia has decreased the chances

of not finding the cancer at the time achalasia is diagnosed.

lung cancer, mouth

cancer, and also might be a very early sign of

Alzheimer's.

I don't remember reading about any links to lung or mouth cancer.

Swallowing problems, that can mimic achalasia, are common in people with

degenerative neural problems. Here again good testing is important to

reduce the chance of not find a cause for secondary achalasia. The damage

nerves in achalasia have similarities with nerves damaged in other

degenerative neural problems, but that may not mean the chance of getting

one is increased if you have primary achalasia.

notan

[Guest guest]

I agree. When I first went to the gastro doc she thought I might have esop cancer. They never heard of the big A. Did allot of research. The one preventive thing that one can do is drink green tea. I dont love the taste but I drink a couple of cups every day! There is allot of research that supports the affect of green tea on esop cancer.

RE: first post

Evita wrote:

I've also heard that A gives you a higher risk of cancer of the oesopaghus, You can easily find studies that say that, however there are reasons to question the conclusion. If you look at the people that have been diagnosed with achalasia and then see how many of them are later found to have cancer of the esophagus you will find more of them become diagnosed with the cancer than a comparable group of people with out achalasia, (about 5% more, according to some studies, but other percentages in other studies). At first glance that seems to support the conclusion. There is a problem though. Some people diagnosed with achalasia actually have secondary achalasia, secondary to cancer. They don't have idiopathic primary achalasia. So, though the cancer came first it was not diagnosed until after the achalasia. Generally, the cancer will become obvious sometime in about the next two years. My understanding is that if you looked at how many develop the cancer in later years the rate would looks about normal. The main way you can decrease your chances of getting esophageal cancer is to not smoke or drink alcohol.My guess is that better testing for achalasia has decreased the chances of not finding the cancer at the time achalasia is diagnosed.

lung cancer, mouth cancer, and also might be a very early sign of Alzheimer's.I don't remember reading about any links to lung or mouth cancer. Swallowing problems, that can mimic achalasia, are common in people with degenerative neural problems. Here again good testing is important to reduce the chance of not find a cause for secondary achalasia. The damage nerves in achalasia have similarities with nerves damaged in other degenerative neural problems, but that may not mean the chance of getting one is increased if you have primary achalasia. notan