My Story

[Guest guest]

Hi Suzana,

I completely feel you pain, and please know you are not alone. Our

son started with the fevers at 11 weeks and now at almost 3

years old he is still getting them. He also had 3 febrile seizures in

1 years time, they are very scary. He also does not take medicine

well, its a huge battle and it usually takes about 3 people to give

anything to him- 2 to hold him down and 1 to administer the medicine.

He screams the entire time. We also use predilsone, but, we are using

the Orapred disolavable tablets, 15 mg. Supposedly, it has a grape

flavor that tastes kind of like the Smarties candy. It dissolves

quickly and I I give him lots of water afterwards and he is fine. I

also give him water before so his mouth is not too dry and it

dissolves quicker. Its still a battle, but not as bad as a liquid

medication. We also bribe him each time he takes it with a toy or

cookie, sometimes this helps as well. You can find lots of info on

Orapred online. You will find lots of information and support on this

board.

best wishes,

Ruthie

mom to , age almost 3, and Gabby, age 12 months

[Guest guest]

Hi Suzana,

I completely feel you pain, and please know you are not alone. Our

son started with the fevers at 11 weeks and now at almost 3

years old he is still getting them. He also had 3 febrile seizures in

1 years time, they are very scary. He also does not take medicine

well, its a huge battle and it usually takes about 3 people to give

anything to him- 2 to hold him down and 1 to administer the medicine.

He screams the entire time. We also use predilsone, but, we are using

the Orapred disolavable tablets, 15 mg. Supposedly, it has a grape

flavor that tastes kind of like the Smarties candy. It dissolves

quickly and I I give him lots of water afterwards and he is fine. I

also give him water before so his mouth is not too dry and it

dissolves quicker. Its still a battle, but not as bad as a liquid

medication. We also bribe him each time he takes it with a toy or

cookie, sometimes this helps as well. You can find lots of info on

Orapred online. You will find lots of information and support on this

board.

best wishes,

Ruthie

mom to , age almost 3, and Gabby, age 12 months

[Guest guest]

Thanks Ruthie for the information. I do appreciate and plan to look

into Orapred. We have to meet with the ID doctor on Tuesday, so

hopefully we figure something out.

Kind Regards,

Suzana

Mom to Alissa, 3 1/2 with Pfapa, and 11 months.

[Guest guest]

Thanks Ruthie for the information. I do appreciate and plan to look

into Orapred. We have to meet with the ID doctor on Tuesday, so

hopefully we figure something out.

Kind Regards,

Suzana

Mom to Alissa, 3 1/2 with Pfapa, and 11 months.

[Guest guest]

Thank you to everyone for sending me e-mails on my story. I am

grateful that this site is up and here for us to tell our stories.

I feel better knowing there are others going through it.

Kind Regards,

Suzana Murtishi

Mom to Alissa 3 1/2 with PFapa, and 11 months

[Guest guest]

Thank you to everyone for sending me e-mails on my story. I am

grateful that this site is up and here for us to tell our stories.

I feel better knowing there are others going through it.

Kind Regards,

Suzana Murtishi

Mom to Alissa 3 1/2 with PFapa, and 11 months

[Guest guest]

[LDN_Users] My Story

Where do I start with my 'story', it could take quite a while, but I shall try

and condense it as much as possible. My name is Celia and I live in Scotland, I

am in my 50's, so not exactly a spring chick - but hey - working on it!!

May of 2006 gave me shocking news, that I had a chest full of cancerous lymph

nodes, tears and grief were the most prevalent, grief for the life I may not

have, and for those I would leave behind. The primary tumour was never found,

but I am 'treated' as 'lung' and thus recieved palliative care only, eight doses

of chemo, followed by 12 doses of radiation, it was expected I had 6 - 12 months

of living to do.

I also have/had the following - mild lupus, IBS (so bad sometimes I dare not go

out) , Diverticula, COPD, thyroid problems (had partial thyroidectomy years

ago) osteo arthritis, high blood pressure, high cholestrol, chronic fatigue.

After my conventional treatment, the Onc was amazed when I went into remission,

he assured me this would not last, that I had less than 1% of making it. Not

for me to accept that! Treatment did not seem to be forthcoming after that

initial work, it was a case of watch and wait, I will not wait, I will not

watch, I went in search for anything that might help me

Of course I went on the usual supplements, but knew this was not enough, changed

my diet, but not radically, red meat I could not eat, and my diet consists

mainly of eggs and fish - plus veg and fruit. I have also discovered a penchant

for the darkest chocolate I can find, at least 85 - 86% cocoa. I read about B17

and went to one of Philip Day's lectures, I started taking this almost every day

in kernel form. In January 2007 I had a very bad excacerbation of COPD which

landed me in hospital, I came out on 02 and steroids.

I then learned about Iscador, a derivitive of the Misteltoe, and fortunately as

there is a homeopathic hospital not too far from me I got a referral and now use

Iscador series two, on a regular basis. Still I searched the net, and lo and

behold came across LDN after never hearing of it before, it seemed like a

miracle, I had to have it, I fought for it and got it on the NHS so it costs me

nothing. I got my first bottle but did not dare take it, I was on steroids

regularly for my chest, and had to have my hip replaced and was thus on pain

killers. Each night I looked at the bottle, and each night I thought - shall it

be now? As soon as my hip pain began to diminish, and I could come off the

steroids, I counted the days - and then on day ten I took my first LDN! Don't

know why, but I was frightened of it....

My first feelings on LDN were as though I was on a bit of a high, I felt great,

I had some disturbed nights, not too many strange dreams, and have worked out by

now when it is best for me to take it. This is usually about 9 - 30 pm, and as I

take sleepers an hour later this seems to be working for me. At the time of

writing - (1st June 2008) I have been on LDN for about eight months.

Very soon after staring the LDN I found I did not need the 02 for my COPD, I

only need to nebulise maybe once a day - if that, and today I walked the

furthest I have been able to for what seems ages, it was a miracle, still can't

believe I did it! One thing I noticed early on was that I was not spending half

my life in the loo.... I had been referred for another sigmoidoscopy but

cancelled it, to this day I have never had the bowel problem like I did before

LDN....

My energy began to return, I had had chronic fatigue for many years, but slowly

I am getting more energetic, I was fit enough to have a hip replacement about

six months ago - oh the relief!! My last X ray shows no signs of the cancer

which was supposed to have killed me over a year ago, my blood pressure is now

normal after being too high for a few years, I had to come off BP medications,

my lupus does not bother me at all.. I have a good appetite and am gaining

weight, I feel quite good all things considered, and I recommend LDN to

everyone!

Celia

This may be used in any publication whatsoever......

Celia, Scotland.

celia@...

[Guest guest]

Gene,

Do you have trouble at night when you sleep? Reflux and stuff?

Regards

Arun

Sent on my BlackBerry® from Vodafone Essar

My Story

Hi All -

I've been lurking here for a couple of months now - reading a lot; but

not saying much. I have no questions or words of wisdom; just feel

the need to tell my story... telling ones story has a therapeutic

quality to it, so please indulge me.

I've suffered with dysphagia for nearly 4 years now. At first it was

just a nuisance. Early tests showed a non-specific motility disorder

of my esophagus. Progressively, it got worse, and this winter, I was

finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at

Mass General Hospital in Boston. I am recovering at home, enjoying my

two weeks off and watching reruns of the Beverly Hillbillies.

Although I am restricted to a liquid diet, I can tell my swallowing

has dramatically improved.

The surgery, in the grand scheme of things, wasn't too bad, although I

think it has taken more of a toll on my body than I had anticipated.

As expected, my midsection is very sore. What I wasn't quite

expecting is the number of spasms I've experienced. I guess that the

myotomy is a bit of a shock to the esophagus and spasm is it way of

dealing... we all have our ways of dealing. I'm tired and sometimes

find it difficult to take a full, deep breath; presumable from the

swelling and soreness around my diaphragm.

That said, I'm feeling better each day and looking forward to enjoying

a hamburger this July 4!

Thanks for listening and enjoy the weekend.

Gene in Boston...

[Guest guest]

Hi Arun -

I've only been home from the hospital for a couple of nights, so my

schedule is messed up... What I've been experiencing at night, post

myotomy, are spasms. I don't think it's reflux.

When my achalasia got really bad, I invested in a recliner and it's

been a lifesaver. I'm finding its easier to sleep in the recliner,

although after I heal, expect to be back in the bed...

-gene

>

> Gene,

>

> Do you have trouble at night when you sleep? Reflux and stuff?

>

> Regards

> Arun

> Sent on my BlackBerry® from Vodafone Essar

>

> My Story

>

>

> Hi All -

> I've been lurking here for a couple of months now - reading a lot; but

> not saying much. I have no questions or words of wisdom; just feel

> the need to tell my story... telling ones story has a therapeutic

> quality to it, so please indulge me.

>

> I've suffered with dysphagia for nearly 4 years now. At first it was

> just a nuisance. Early tests showed a non-specific motility disorder

> of my esophagus. Progressively, it got worse, and this winter, I was

> finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at

> Mass General Hospital in Boston. I am recovering at home, enjoying my

> two weeks off and watching reruns of the Beverly Hillbillies.

> Although I am restricted to a liquid diet, I can tell my swallowing

> has dramatically improved.

>

> The surgery, in the grand scheme of things, wasn't too bad, although I

> think it has taken more of a toll on my body than I had anticipated.

> As expected, my midsection is very sore. What I wasn't quite

> expecting is the number of spasms I've experienced. I guess that the

> myotomy is a bit of a shock to the esophagus and spasm is it way of

> dealing... we all have our ways of dealing. I'm tired and sometimes

> find it difficult to take a full, deep breath; presumable from the

> swelling and soreness around my diaphragm.

>

> That said, I'm feeling better each day and looking forward to enjoying

> a hamburger this July 4!

>

> Thanks for listening and enjoy the weekend.

> Gene in Boston...

>

[Guest guest]

Hi Gene from Boston,

Who was your surgeon at MGH? I had mine at MGH too almost 7 weeks ago.

Hopefully your spasms will quiet down- mine did.

Oh Arun, I slept in a recliner for a couple of weeks after my surgery and found that was the only way for me to get comfortable at night. Being back in bed with no wedge pillow is great!!

dawn

My StoryHi All - I've been lurking here for a couple of months now - reading a lot; but not saying much. I have no questions or words of wisdom; just feel the need to tell my story... telling ones story has a therapeutic quality to it, so please indulge me. I've suffered with dysphagia for nearly 4 years now. At first it was just a nuisance. Early tests showed a non-specific motility disorder of my esophagus. Progressively, it got worse, and this winter, I was finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at Mass General Hospital in Boston. I am recovering at home, enjoying my two weeks off and watching reruns of the Beverly Hillbillies. Although I am restricted to a liquid diet, I can tell my swallowing has dramatically improved. The surgery, in the grand scheme of things, wasn't too bad, although I think it has taken more of a toll on my body than I had anticipated. As expected, my midsection is very sore. What I wasn't quite expecting is the number of spasms I've experienced. I guess that the myotomy is a bit of a shock to the esophagus and spasm is it way of dealing... we all have our ways of dealing. I'm tired and sometimes find it difficult to take a full, deep breath; presumable from the swelling and soreness around my diaphragm. That said, I'm feeling better each day and looking forward to enjoying a hamburger this July 4! Thanks for listening and enjoy the weekend. Gene in Boston... ------------------------------------

[Guest guest]

Dr. Rattner - I liked him very much.

After surgery, did you experience that sensation of not be able to

take a real deep breath? I'm also a little hoarse... I'm wondering

if its from the anaesthesia...

>

> Hi Gene from Boston,

> Who was your surgeon at MGH? I had mine at MGH too almost 7 weeks ago.

> Hopefully your spasms will quiet down- mine did.

> Oh Arun, I slept in a recliner for a couple of weeks after my

surgery and found that was the only way for me to get comfortable at

night. Being back in bed with no wedge pillow is great!!

> dawn

> My Story

>

>

> Hi All -

> I've been lurking here for a couple of months now - reading a

lot; but

> not saying much. I have no questions or words of wisdom; just feel

> the need to tell my story... telling ones story has a therapeutic

> quality to it, so please indulge me.

>

> I've suffered with dysphagia for nearly 4 years now. At first it was

> just a nuisance. Early tests showed a non-specific motility disorder

> of my esophagus. Progressively, it got worse, and this winter, I was

> finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at

> Mass General Hospital in Boston. I am recovering at home, enjoying my

> two weeks off and watching reruns of the Beverly Hillbillies.

> Although I am restricted to a liquid diet, I can tell my swallowing

> has dramatically improved.

>

> The surgery, in the grand scheme of things, wasn't too bad,

although I

> think it has taken more of a toll on my body than I had anticipated.

> As expected, my midsection is very sore. What I wasn't quite

> expecting is the number of spasms I've experienced. I guess that the

> myotomy is a bit of a shock to the esophagus and spasm is it way of

> dealing... we all have our ways of dealing. I'm tired and sometimes

> find it difficult to take a full, deep breath; presumable from the

> swelling and soreness around my diaphragm.

>

> That said, I'm feeling better each day and looking forward to

enjoying

> a hamburger this July 4!

>

> Thanks for listening and enjoy the weekend.

> Gene in Boston...

>

>

> ------------------------------------

>

>

[Guest guest]

Hi, Gene,

Yes, the deep breath problems were something I had, too, after my myotomy.

I think my lung just needed more time and more exercise to get back to its old self.

Resting and not lifting anything heavy helped me a lot.

Deborah

[Guest guest]

Thanks Deborah -

It seems to improve daily. In the hospital, they gave me some device

to blow into, presumably to help my lungs recover from the

anesthesia. I was told I would be doing it ever hour or so for the

duration of my stay. Of course, I never did and here we are. I've

been trying to do gentle deep breathing exercises at home and it seems

to help.

gene

>

> Hi, Gene,

> & nbsp;

> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Yes, the deep breath problems were

something I had, too, after my myotomy.

> I think my lung just needed more time and more exercise to get back

to its old self.

> Resting and not lifting anything heavy helped me a lot.

> & nbsp;

> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;Deborah

>

[Guest guest]

I had Dr. Rattner too and also liked him. Yes, I did have that "lung feeling". It is usually from anesthesia and it is called atelectasis. The small air cells in your lung do not fill with air when you inhale like they usually do - if untreated this can lead to pneumonia. That is why they tell you to take big deep breaths and use that little gadget called an incentive sprirometer. That helps reinflate those little air cells. I think the hoarseness if from the endotracheal tube. Also, Dr. Rattner does intra-operative Upper endoscopy to confirm that the myotomy transverses the sphincter and to confirm that there are no leaks -so that could cause some hoarseness too. For me that all passed pretty quickly.

Glad to hear from you! I will be looking forward to checking in with you over time to see how you are doing as we had the same surgery with the same surgeon very close together in time!!

Have a great weekend!

Dawn

My Story> > > Hi All - > I've been lurking here for a couple of months now - reading alot; but> not saying much. I have no questions or words of wisdom; just feel> the need to tell my story... telling ones story has a therapeutic> quality to it, so please indulge me.> > I've suffered with dysphagia for nearly 4 years now. At first it was> just a nuisance. Early tests showed a non-specific motility disorder> of my esophagus. Progressively, it got worse, and this winter, I was> finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at> Mass General Hospital in Boston. I am recovering at home, enjoying my> two weeks off and watching reruns of the Beverly Hillbillies. > Although I am restricted to a liquid diet, I can tell my swallowing> has dramatically improved. > > The surgery, in the grand scheme of things, wasn't too bad,although I> think it has taken more of a toll on my body than I had anticipated. > As expected, my midsection is very sore. What I wasn't quite> expecting is the number of spasms I've experienced. I guess that the> myotomy is a bit of a shock to the esophagus and spasm is it way of> dealing... we all have our ways of dealing. I'm tired and sometimes> find it difficult to take a full, deep breath; presumable from the> swelling and soreness around my diaphragm.> > That said, I'm feeling better each day and looking forward toenjoying> a hamburger this July 4!> > Thanks for listening and enjoy the weekend.> Gene in Boston...> > > ------------------------------------> >

[Guest guest]

Hello Gene

As someone who only had the Myotomy June 2, please have a little patience you will be able to swallow your hamburger again but take my advice and those in this group please take your time and listen to your own body. It will tell you when your are ready to try solids. The first time after liquids may be difficult but bear with it you will make it. It is still early days yet. Good luck with trying to swallow a hamburger on July 4th.

My Story

Hi All - I've been lurking here for a couple of months now - reading a lot; butnot saying much. I have no questions or words of wisdom; just feelthe need to tell my story... telling ones story has a therapeuticquality to it, so please indulge me.I've suffered with dysphagia for nearly 4 years now. At first it wasjust a nuisance. Early tests showed a non-specific motility disorderof my esophagus. Progressively, it got worse, and this winter, I wasfinally diagnosed with achalasia. Monday, Jun 2, I had a myotomy atMass General Hospital in Boston. I am recovering at home, enjoying mytwo weeks off and watching reruns of the Beverly Hillbillies. Although I am restricted to a liquid diet, I can tell my swallowinghas dramatically improved. The surgery, in the grand scheme of things, wasn't too bad, although Ithink it has taken more of a toll on my body than I had anticipated. As expected, my

midsection is very sore. What I wasn't quiteexpecting is the number of spasms I've experienced. I guess that themyotomy is a bit of a shock to the esophagus and spasm is it way ofdealing... we all have our ways of dealing. I'm tired and sometimesfind it difficult to take a full, deep breath; presumable from theswelling and soreness around my diaphragm.That said, I'm feeling better each day and looking forward to enjoyinga hamburger this July 4!Thanks for listening and enjoy the weekend.Gene in Boston...

[Guest guest]

Hi Gene,

I just wanted to wish you a very speedy recovery. I hope you will be

able to enjoy that hamburger on July 4th!

Orlando, Florida

>

> Hi All -

> I've been lurking here for a couple of months now - reading a lot;

but

> not saying much. I have no questions or words of wisdom; just feel

> the need to tell my story... telling ones story has a therapeutic

> quality to it, so please indulge me.

>

> I've suffered with dysphagia for nearly 4 years now. At first it

was

> just a nuisance. Early tests showed a non-specific motility

disorder

> of my esophagus. Progressively, it got worse, and this winter, I

was

> finally diagnosed with achalasia. Monday, Jun 2, I had a myotomy at

> Mass General Hospital in Boston. I am recovering at home, enjoying

my

> two weeks off and watching reruns of the Beverly Hillbillies.

> Although I am restricted to a liquid diet, I can tell my swallowing

> has dramatically improved.

>

> The surgery, in the grand scheme of things, wasn't too bad,

although I

> think it has taken more of a toll on my body than I had

anticipated.

> As expected, my midsection is very sore. What I wasn't quite

> expecting is the number of spasms I've experienced. I guess that

the

> myotomy is a bit of a shock to the esophagus and spasm is it way of

> dealing... we all have our ways of dealing. I'm tired and sometimes

> find it difficult to take a full, deep breath; presumable from the

> swelling and soreness around my diaphragm.

>

> That said, I'm feeling better each day and looking forward to

enjoying

> a hamburger this July 4!

>

> Thanks for listening and enjoy the weekend.

> Gene in Boston...

>

[Guest guest]

Welcome to the group. You don't mention if anyone ever told you to eat very

little salt. I stay under 800 mg a day. If I eat more than that, I am sick

and cannot sleep.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of ulffreddy1

Happy to be among equals. I am a male born 1950. There is a history

of autoimmune deseases in our family. My sister has pernicious

anemia, hypothereose and arthrisis. Her daughter has pernicious

anemia, hypothyreose, and living with lupus since she was borne.

I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

the right gland and the surgeon said the tumor was as big as the the

gland.

I think i had the symptoms from very early on, maybe already as a

child. During college I used to skip to days a week. Looking back I

see that I was feeling tired. I used to train during wintertime, but

had trouble to run playing soccer in summer. Enlisted in the military

19 years old and had diffuculties competing with the others when it

was hot. One warm day I even fainted standing along the others. Other

symptoms were anxiety, my handwas shaking when drinking coffee and I

had to use both hands. Turning 20 and the headaches started on. In 81

I was diagnosed with hypertension and low pottassium. At 30 I begun

to frequent the bathroom during nighttime. I used to fall asleep 4 to

6 oclock`in the morning, sleeping to 11 to 14. After surgery the

headaches disapeared and I started to sleep well again. The left

gland was producing to much aldo, 1400, and I was put on 50-100

spiro. Still BP remained high, about 105, and the endo I was seeing

every 3 months said it was ok. Because of the sideeffects we tried

another medicament. In the beginning it worked ok, but then BP was

140. We then had to use spiro again, but at that time I started to

get irregular heartbeats. Determined to lower BP I visited a

cardiovascular center and I got 100 mg Selozok in addition. Since

then BP has been ok and for a while the extra systoles stopped. One

night in 90 I started to frequent the the bathroom again and the

irregular heartbeats got worse and I had it 24 hours a day. Going to

bed was terrible because then it got even worse and I had problems

laying on my left side and the stomach. My endo thought this was not

related to PA and in 96 I had surgery burning the nerves in the

bladder, but to no help. During this years I had almost no sleep. I

would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

sleep. In 2 weeks time I would almost certain have 3 days with no

sleep. In 2000 I met another endo who is quit controversial. He did a

lot of tests, and I was set on low dose levaxin. My aching muscles

got better and the sleep started to be better, I even fall into deep

sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

fruit,no potatoes, no sweet,no dairy products. After 1 week the

irregular heartbeats disappeared and I am in much better conditons

now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

perfect. I dont know if could be better with low salt diet. The

kidney areas is hurting and I some time have problems to swallow. If

you have some advice? This was not meant to complain, I am feeling

quit well and is in fulltime job.

[Guest guest]

Just found Trader Joes low Na tomatoe n

Roasted soup Na 140

K 720/cup good too

Sent from my iPhone

On Sep 22, 2008, at 8:31 AM, Valarie <val@...> wrote:

> Welcome to the group. You don't mention if anyone ever told you to

> eat very

> little salt. I stay under 800 mg a day. If I eat more than that, I

> am sick

> and cannot sleep.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of ulffreddy1

>

> Happy to be among equals. I am a male born 1950. There is a history

> of autoimmune deseases in our family. My sister has pernicious

> anemia, hypothereose and arthrisis. Her daughter has pernicious

> anemia, hypothyreose, and living with lupus since she was borne.

> I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> the right gland and the surgeon said the tumor was as big as the the

> gland.

> I think i had the symptoms from very early on, maybe already as a

> child. During college I used to skip to days a week. Looking back I

> see that I was feeling tired. I used to train during wintertime, but

> had trouble to run playing soccer in summer. Enlisted in the military

> 19 years old and had diffuculties competing with the others when it

> was hot. One warm day I even fainted standing along the others. Other

> symptoms were anxiety, my handwas shaking when drinking coffee and I

> had to use both hands. Turning 20 and the headaches started on. In 81

> I was diagnosed with hypertension and low pottassium. At 30 I begun

> to frequent the bathroom during nighttime. I used to fall asleep 4 to

> 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> headaches disapeared and I started to sleep well again. The left

> gland was producing to much aldo, 1400, and I was put on 50-100

> spiro. Still BP remained high, about 105, and the endo I was seeing

> every 3 months said it was ok. Because of the sideeffects we tried

> another medicament. In the beginning it worked ok, but then BP was

> 140. We then had to use spiro again, but at that time I started to

> get irregular heartbeats. Determined to lower BP I visited a

> cardiovascular center and I got 100 mg Selozok in addition. Since

> then BP has been ok and for a while the extra systoles stopped. One

> night in 90 I started to frequent the the bathroom again and the

> irregular heartbeats got worse and I had it 24 hours a day. Going to

> bed was terrible because then it got even worse and I had problems

> laying on my left side and the stomach. My endo thought this was not

> related to PA and in 96 I had surgery burning the nerves in the

> bladder, but to no help. During this years I had almost no sleep. I

> would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> sleep. In 2 weeks time I would almost certain have 3 days with no

> sleep. In 2000 I met another endo who is quit controversial. He did a

> lot of tests, and I was set on low dose levaxin. My aching muscles

> got better and the sleep started to be better, I even fall into deep

> sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

> fruit,no potatoes, no sweet,no dairy products. After 1 week the

> irregular heartbeats disappeared and I am in much better conditons

> now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

> perfect. I dont know if could be better with low salt diet. The

> kidney areas is hurting and I some time have problems to swallow. If

> you have some advice? This was not meant to complain, I am feeling

> quit well and is in fulltime job.

>

>

[Guest guest]

Classic story as u can see from our files. If u approve we will add

yours

If you can expand details

U need to get path report on

gland

Read in files Grim Evol of PA

And take 2 all drs

Get DASH book

U almost certainly have recurrent Conn's or of others in family have

similar prob GRA

CE ms

Sent from my iPhone

On Sep 22, 2008, at 8:31 AM, Valarie <val@...> wrote:

> Welcome to the group. You don't mention if anyone ever told you to

> eat very

> little salt. I stay under 800 mg a day. If I eat more than that, I

> am sick

> and cannot sleep.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of ulffreddy1

>

> Happy to be among equals. I am a male born 1950. There is a history

> of autoimmune deseases in our family. My sister has pernicious

> anemia, hypothereose and arthrisis. Her daughter has pernicious

> anemia, hypothyreose, and living with lupus since she was borne.

> I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> the right gland and the surgeon said the tumor was as big as the the

> gland.

> I think i had the symptoms from very early on, maybe already as a

> child. During college I used to skip to days a week. Looking back I

> see that I was feeling tired. I used to train during wintertime, but

> had trouble to run playing soccer in summer. Enlisted in the military

> 19 years old and had diffuculties competing with the others when it

> was hot. One warm day I even fainted standing along the others. Other

> symptoms were anxiety, my handwas shaking when drinking coffee and I

> had to use both hands. Turning 20 and the headaches started on. In 81

> I was diagnosed with hypertension and low pottassium. At 30 I begun

> to frequent the bathroom during nighttime. I used to fall asleep 4 to

> 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> headaches disapeared and I started to sleep well again. The left

> gland was producing to much aldo, 1400, and I was put on 50-100

> spiro. Still BP remained high, about 105, and the endo I was seeing

> every 3 months said it was ok. Because of the sideeffects we tried

> another medicament. In the beginning it worked ok, but then BP was

> 140. We then had to use spiro again, but at that time I started to

> get irregular heartbeats. Determined to lower BP I visited a

> cardiovascular center and I got 100 mg Selozok in addition. Since

> then BP has been ok and for a while the extra systoles stopped. One

> night in 90 I started to frequent the the bathroom again and the

> irregular heartbeats got worse and I had it 24 hours a day. Going to

> bed was terrible because then it got even worse and I had problems

> laying on my left side and the stomach. My endo thought this was not

> related to PA and in 96 I had surgery burning the nerves in the

> bladder, but to no help. During this years I had almost no sleep. I

> would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> sleep. In 2 weeks time I would almost certain have 3 days with no

> sleep. In 2000 I met another endo who is quit controversial. He did a

> lot of tests, and I was set on low dose levaxin. My aching muscles

> got better and the sleep started to be better, I even fall into deep

> sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

> fruit,no potatoes, no sweet,no dairy products. After 1 week the

> irregular heartbeats disappeared and I am in much better conditons

> now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

> perfect. I dont know if could be better with low salt diet. The

> kidney areas is hurting and I some time have problems to swallow. If

> you have some advice? This was not meant to complain, I am feeling

> quit well and is in fulltime job.

>

>

[Guest guest]

Any family with low K

Sent from my iPhone

On Sep 22, 2008, at 4:41 AM, ulffreddy1 <ulffreddy1@...> wrote:

> Happy to be among equals. I am a male born 1950. There is a history

> of autoimmune deseases in our family. My sister has pernicious

> anemia, hypothereose and arthrisis. Her daughter has pernicious

> anemia, hypothyreose, and living with lupus since she was borne.

> I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> the right gland and the surgeon said the tumor was as big as the the

> gland.

> I think i had the symptoms from very early on, maybe already as a

> child. During college I used to skip to days a week. Looking back I

> see that I was feeling tired. I used to train during wintertime, but

> had trouble to run playing soccer in summer. Enlisted in the military

> 19 years old and had diffuculties competing with the others when it

> was hot. One warm day I even fainted standing along the others. Other

> symptoms were anxiety, my handwas shaking when drinking coffee and I

> had to use both hands. Turning 20 and the headaches started on. In 81

> I was diagnosed with hypertension and low pottassium. At 30 I begun

> to frequent the bathroom during nighttime. I used to fall asleep 4 to

> 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> headaches disapeared and I started to sleep well again. The left

> gland was producing to much aldo, 1400, and I was put on 50-100

> spiro. Still BP remained high, about 105, and the endo I was seeing

> every 3 months said it was ok. Because of the sideeffects we tried

> another medicament. In the beginning it worked ok, but then BP was

> 140. We then had to use spiro again, but at that time I started to

> get irregular heartbeats. Determined to lower BP I visited a

> cardiovascular center and I got 100 mg Selozok in addition. Since

> then BP has been ok and for a while the extra systoles stopped. One

> night in 90 I started to frequent the the bathroom again and the

> irregular heartbeats got worse and I had it 24 hours a day. Going to

> bed was terrible because then it got even worse and I had problems

> laying on my left side and the stomach. My endo thought this was not

> related to PA and in 96 I had surgery burning the nerves in the

> bladder, but to no help. During this years I had almost no sleep. I

> would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> sleep. In 2 weeks time I would almost certain have 3 days with no

> sleep. In 2000 I met another endo who is quit controversial. He did a

> lot of tests, and I was set on low dose levaxin. My aching muscles

> got better and the sleep started to be better, I even fall into deep

> sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

> fruit,no potatoes, no sweet,no dairy products. After 1 week the

> irregular heartbeats disappeared and I am in much better conditons

> now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

> perfect. I dont know if could be better with low salt diet. The

> kidney areas is hurting and I some time have problems to swallow. If

> you have some advice? This was not meant to complain, I am feeling

> quit well and is in fulltime job.

>

>

[Guest guest]

There is no other in my family that has low k as I know, but my sister has high

BP and anxiety. She has been checked for PA, but negative.

Re: My story

Any family with low K

Sent from my iPhone

On Sep 22, 2008, at 4:41 AM, ulffreddy1 <ulffreddy1 (DOT) com> wrote:

> Happy to be among equals. I am a male born 1950. There is a history

> of autoimmune deseases in our family. My sister has pernicious

> anemia, hypothereose and arthrisis. Her daughter has pernicious

> anemia, hypothyreose, and living with lupus since she was borne.

> I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> the right gland and the surgeon said the tumor was as big as the the

> gland.

> I think i had the symptoms from very early on, maybe already as a

> child. During college I used to skip to days a week. Looking back I

> see that I was feeling tired. I used to train during wintertime, but

> had trouble to run playing soccer in summer. Enlisted in the military

> 19 years old and had diffuculties competing with the others when it

> was hot. One warm day I even fainted standing along the others. Other

> symptoms were anxiety, my handwas shaking when drinking coffee and I

> had to use both hands. Turning 20 and the headaches started on. In 81

> I was diagnosed with hypertension and low pottassium. At 30 I begun

> to frequent the bathroom during nighttime. I used to fall asleep 4 to

> 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> headaches disapeared and I started to sleep well again. The left

> gland was producing to much aldo, 1400, and I was put on 50-100

> spiro. Still BP remained high, about 105, and the endo I was seeing

> every 3 months said it was ok. Because of the sideeffects we tried

> another medicament. In the beginning it worked ok, but then BP was

> 140. We then had to use spiro again, but at that time I started to

> get irregular heartbeats. Determined to lower BP I visited a

> cardiovascular center and I got 100 mg Selozok in addition. Since

> then BP has been ok and for a while the extra systoles stopped. One

> night in 90 I started to frequent the the bathroom again and the

> irregular heartbeats got worse and I had it 24 hours a day. Going to

> bed was terrible because then it got even worse and I had problems

> laying on my left side and the stomach. My endo thought this was not

> related to PA and in 96 I had surgery burning the nerves in the

> bladder, but to no help. During this years I had almost no sleep. I

> would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> sleep. In 2 weeks time I would almost certain have 3 days with no

> sleep. In 2000 I met another endo who is quit controversial. He did a

> lot of tests, and I was set on low dose levaxin. My aching muscles

> got better and the sleep started to be better, I even fall into deep

> sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

> fruit,no potatoes, no sweet,no dairy products. After 1 week the

> irregular heartbeats disappeared and I am in much better conditons

> now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

> perfect. I dont know if could be better with low salt diet. The

> kidney areas is hurting and I some time have problems to swallow. If

> you have some advice? This was not meant to complain, I am feeling

> quit well and is in fulltime job.

>

>

[Guest guest]

No, I have asked close family and nobody have low K.

Re: My story

Any family with low K

Sent from my iPhone

On Sep 22, 2008, at 4:41 AM, ulffreddy1 <ulffreddy1 (DOT) com> wrote:

> Happy to be among equals. I am a male born 1950. There is a history

> of autoimmune deseases in our family. My sister has pernicious

> anemia, hypothereose and arthrisis. Her daughter has pernicious

> anemia, hypothyreose, and living with lupus since she was borne.

> I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> the right gland and the surgeon said the tumor was as big as the the

> gland.

> I think i had the symptoms from very early on, maybe already as a

> child. During college I used to skip to days a week. Looking back I

> see that I was feeling tired. I used to train during wintertime, but

> had trouble to run playing soccer in summer. Enlisted in the military

> 19 years old and had diffuculties competing with the others when it

> was hot. One warm day I even fainted standing along the others. Other

> symptoms were anxiety, my handwas shaking when drinking coffee and I

> had to use both hands. Turning 20 and the headaches started on. In 81

> I was diagnosed with hypertension and low pottassium. At 30 I begun

> to frequent the bathroom during nighttime. I used to fall asleep 4 to

> 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> headaches disapeared and I started to sleep well again. The left

> gland was producing to much aldo, 1400, and I was put on 50-100

> spiro. Still BP remained high, about 105, and the endo I was seeing

> every 3 months said it was ok. Because of the sideeffects we tried

> another medicament. In the beginning it worked ok, but then BP was

> 140. We then had to use spiro again, but at that time I started to

> get irregular heartbeats. Determined to lower BP I visited a

> cardiovascular center and I got 100 mg Selozok in addition. Since

> then BP has been ok and for a while the extra systoles stopped. One

> night in 90 I started to frequent the the bathroom again and the

> irregular heartbeats got worse and I had it 24 hours a day. Going to

> bed was terrible because then it got even worse and I had problems

> laying on my left side and the stomach. My endo thought this was not

> related to PA and in 96 I had surgery burning the nerves in the

> bladder, but to no help. During this years I had almost no sleep. I

> would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> sleep. In 2 weeks time I would almost certain have 3 days with no

> sleep. In 2000 I met another endo who is quit controversial. He did a

> lot of tests, and I was set on low dose levaxin. My aching muscles

> got better and the sleep started to be better, I even fall into deep

> sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

> fruit,no potatoes, no sweet,no dairy products. After 1 week the

> irregular heartbeats disappeared and I am in much better conditons

> now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

> perfect.. I dont know if could be better with low salt diet. The

> kidney areas is hurting and I some time have problems to swallow. If

> you have some advice? This was not meant to complain, I am feeling

> quit well and is in fulltime job.

>

>

[Guest guest]

Cant remember that any of the 4 endos I have been seeing have mentioned that.

But I for certain been reading about it in articles about aldo and I have no

craving for salt. Guess my saltintake is very low, but not sure how low.

RE: CMy story

Welcome to the group. You don't mention if anyone ever told you to eat very

little salt. I stay under 800 mg a day. If I eat more than that, I am sick

and cannot sleep.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism] On Behalf Of ulffreddy1

Happy to be among equals. I am a male born 1950. There is a history

of autoimmune deseases in our family. My sister has pernicious

anemia, hypothereose and arthrisis. Her daughter has pernicious

anemia, hypothyreose, and living with lupus since she was borne.

I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

the right gland and the surgeon said the tumor was as big as the the

gland.

I think i had the symptoms from very early on, maybe already as a

child. During college I used to skip to days a week. Looking back I

see that I was feeling tired. I used to train during wintertime, but

had trouble to run playing soccer in summer. Enlisted in the military

19 years old and had diffuculties competing with the others when it

was hot. One warm day I even fainted standing along the others. Other

symptoms were anxiety, my handwas shaking when drinking coffee and I

had to use both hands. Turning 20 and the headaches started on. In 81

I was diagnosed with hypertension and low pottassium. At 30 I begun

to frequent the bathroom during nighttime. I used to fall asleep 4 to

6 oclock`in the morning, sleeping to 11 to 14. After surgery the

headaches disapeared and I started to sleep well again. The left

gland was producing to much aldo, 1400, and I was put on 50-100

spiro. Still BP remained high, about 105, and the endo I was seeing

every 3 months said it was ok. Because of the sideeffects we tried

another medicament. In the beginning it worked ok, but then BP was

140. We then had to use spiro again, but at that time I started to

get irregular heartbeats. Determined to lower BP I visited a

cardiovascular center and I got 100 mg Selozok in addition. Since

then BP has been ok and for a while the extra systoles stopped. One

night in 90 I started to frequent the the bathroom again and the

irregular heartbeats got worse and I had it 24 hours a day. Going to

bed was terrible because then it got even worse and I had problems

laying on my left side and the stomach. My endo thought this was not

related to PA and in 96 I had surgery burning the nerves in the

bladder, but to no help. During this years I had almost no sleep. I

would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

sleep. In 2 weeks time I would almost certain have 3 days with no

sleep. In 2000 I met another endo who is quit controversial. He did a

lot of tests, and I was set on low dose levaxin. My aching muscles

got better and the sleep started to be better, I even fall into deep

sleep. Then he adviced me to eat every 2 hours, mostly vegetables, no

fruit,no potatoes, no sweet,no dairy products. After 1 week the

irregular heartbeats disappeared and I am in much better conditons

now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

d and k suplements, calsium, omega 3 and DHEA. The sleep is still not

perfect. I dont know if could be better with low salt diet. The

kidney areas is hurting and I some time have problems to swallow. If

you have some advice? This was not meant to complain, I am feeling

quit well and is in fulltime job.

[Guest guest]

Interesting that no endo mentioned diet.

Must not have heard of dr conn

Sent from my iPhone

On Sep 24, 2008, at 8:59 AM, Freddy Johansen <ulffreddy1@...>

wrote:

> No, I have asked close family and nobody have low K.

>

> Re: My story

>

> Any family with low K

>

> Sent from my iPhone

>

> On Sep 22, 2008, at 4:41 AM, ulffreddy1 <ulffreddy1 (DOT) com> wrote:

>

> > Happy to be among equals. I am a male born 1950. There is a history

> > of autoimmune deseases in our family. My sister has pernicious

> > anemia, hypothereose and arthrisis. Her daughter has pernicious

> > anemia, hypothyreose, and living with lupus since she was borne.

> > I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> > the right gland and the surgeon said the tumor was as big as the the

> > gland.

> > I think i had the symptoms from very early on, maybe already as a

> > child. During college I used to skip to days a week. Looking back I

> > see that I was feeling tired. I used to train during wintertime, but

> > had trouble to run playing soccer in summer. Enlisted in the

> military

> > 19 years old and had diffuculties competing with the others when it

> > was hot. One warm day I even fainted standing along the others.

> Other

> > symptoms were anxiety, my handwas shaking when drinking coffee and I

> > had to use both hands. Turning 20 and the headaches started on. In

> 81

> > I was diagnosed with hypertension and low pottassium. At 30 I begun

> > to frequent the bathroom during nighttime. I used to fall asleep 4

> to

> > 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> > headaches disapeared and I started to sleep well again. The left

> > gland was producing to much aldo, 1400, and I was put on 50-100

> > spiro. Still BP remained high, about 105, and the endo I was seeing

> > every 3 months said it was ok. Because of the sideeffects we tried

> > another medicament. In the beginning it worked ok, but then BP was

> > 140. We then had to use spiro again, but at that time I started to

> > get irregular heartbeats. Determined to lower BP I visited a

> > cardiovascular center and I got 100 mg Selozok in addition. Since

> > then BP has been ok and for a while the extra systoles stopped. One

> > night in 90 I started to frequent the the bathroom again and the

> > irregular heartbeats got worse and I had it 24 hours a day. Going to

> > bed was terrible because then it got even worse and I had problems

> > laying on my left side and the stomach. My endo thought this was not

> > related to PA and in 96 I had surgery burning the nerves in the

> > bladder, but to no help. During this years I had almost no sleep. I

> > would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> > sleep. In 2 weeks time I would almost certain have 3 days with no

> > sleep. In 2000 I met another endo who is quit controversial. He

> did a

> > lot of tests, and I was set on low dose levaxin. My aching muscles

> > got better and the sleep started to be better, I even fall into deep

> > sleep. Then he adviced me to eat every 2 hours, mostly vegetables,

> no

> > fruit,no potatoes, no sweet,no dairy products. After 1 week the

> > irregular heartbeats disappeared and I am in much better conditons

> > now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> > d and k suplements, calsium, omega 3 and DHEA. The sleep is still

> not

> > perfect.. I dont know if could be better with low salt diet. The

> > kidney areas is hurting and I some time have problems to swallow. If

> > you have some advice? This was not meant to complain, I am feeling

> > quit well and is in fulltime job.

> >

> >

>

>

[Guest guest]

Dr Conn was only one of the most famous Endos in the world

He was awarded the highest awards for

His htn as well as his diabetes research

Sent from my iPhone

On Sep 24, 2008, at 8:59 AM, Freddy Johansen <ulffreddy1@...>

wrote:

> No, I have asked close family and nobody have low K.

>

> Re: My story

>

> Any family with low K

>

> Sent from my iPhone

>

> On Sep 22, 2008, at 4:41 AM, ulffreddy1 <ulffreddy1 (DOT) com> wrote:

>

> > Happy to be among equals. I am a male born 1950. There is a history

> > of autoimmune deseases in our family. My sister has pernicious

> > anemia, hypothereose and arthrisis. Her daughter has pernicious

> > anemia, hypothyreose, and living with lupus since she was borne.

> > I was diagnosed with PA in 86. Aldo was then 2320. Surgery removed

> > the right gland and the surgeon said the tumor was as big as the the

> > gland.

> > I think i had the symptoms from very early on, maybe already as a

> > child. During college I used to skip to days a week. Looking back I

> > see that I was feeling tired. I used to train during wintertime, but

> > had trouble to run playing soccer in summer. Enlisted in the

> military

> > 19 years old and had diffuculties competing with the others when it

> > was hot. One warm day I even fainted standing along the others.

> Other

> > symptoms were anxiety, my handwas shaking when drinking coffee and I

> > had to use both hands. Turning 20 and the headaches started on. In

> 81

> > I was diagnosed with hypertension and low pottassium. At 30 I begun

> > to frequent the bathroom during nighttime. I used to fall asleep 4

> to

> > 6 oclock`in the morning, sleeping to 11 to 14. After surgery the

> > headaches disapeared and I started to sleep well again. The left

> > gland was producing to much aldo, 1400, and I was put on 50-100

> > spiro. Still BP remained high, about 105, and the endo I was seeing

> > every 3 months said it was ok. Because of the sideeffects we tried

> > another medicament. In the beginning it worked ok, but then BP was

> > 140. We then had to use spiro again, but at that time I started to

> > get irregular heartbeats. Determined to lower BP I visited a

> > cardiovascular center and I got 100 mg Selozok in addition. Since

> > then BP has been ok and for a while the extra systoles stopped. One

> > night in 90 I started to frequent the the bathroom again and the

> > irregular heartbeats got worse and I had it 24 hours a day. Going to

> > bed was terrible because then it got even worse and I had problems

> > laying on my left side and the stomach. My endo thought this was not

> > related to PA and in 96 I had surgery burning the nerves in the

> > bladder, but to no help. During this years I had almost no sleep. I

> > would lay awake to 5 or 6 in the morning and maybe get 1 to 3 hours

> > sleep. In 2 weeks time I would almost certain have 3 days with no

> > sleep. In 2000 I met another endo who is quit controversial. He

> did a

> > lot of tests, and I was set on low dose levaxin. My aching muscles

> > got better and the sleep started to be better, I even fall into deep

> > sleep. Then he adviced me to eat every 2 hours, mostly vegetables,

> no

> > fruit,no potatoes, no sweet,no dairy products. After 1 week the

> > irregular heartbeats disappeared and I am in much better conditons

> > now. I guess he saved my life. Today my aldo is 1650, nat 145. I vit

> > d and k suplements, calsium, omega 3 and DHEA. The sleep is still

> not

> > perfect.. I dont know if could be better with low salt diet. The

> > kidney areas is hurting and I some time have problems to swallow. If

> > you have some advice? This was not meant to complain, I am feeling

> > quit well and is in fulltime job.

> >

> >

>

>