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,

I have cp in both knees, had scrape in right knee and

nothing in left and the right still hurts me more. I

always suggest surgery should be a last resort. I am

improving every day, walking on an inclined treadmill

and staying away from stairs altogether. I had to

completely remodel my life to stay away from stairs

but I have improved greatly. Try to eat a little

something with your advil, aleve to lessen your risk

of stomach trouble.

Best of luck,

--- arbrador@... wrote:

> Hello,

> I've had " chondromalacia " for about 3 months now. My

> doctor was

> Dye who believes that most of it is caused by

> synovitis but he still

> wanted to do surgery on me to clean it up and also

> have a torn

> meniscus on MRI. A second opinion said no way should

> I have surgery.

> 80% get better on their own with Alleve and intense

> PT to strengthen

> VMO. That's what I'm doing now and think it's a

> little better but

> still get pain under the kneecap and can't do any

> stair or hill

> climbing. Especially going down stairs is bad. Do

> many people get

> better by 6 months? When should I look into Synvsc?

> Will that help me?

> Should I have had surgery as Dye recommended?

> Thanks,

>

>

__________________________________________________

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I definitely recommend surgery as a last option. I haven't had the numerous

surgeries of some of the people I've talked to and seen online, but the one

I had about 15 years ago didn't help, and made things worse. It was a

lateral release, medial reef. I apparently have a genetic mal-tracking of

the patella, my L knee is also grinding, but the R knee that has had 2

injuries (both were blows to the side of the knee causing a partial

dislocation of the kneecap) and the release surgery is MUCH worse.

This last July, I had a diagnostic scope and cleanout and my OS took the

cartilage cells for the ACI/Carticel. Initially, the cleanout helped a lot,

but now 4 months later I'm having pain again and its worsening rapidly.

The surgical options before the CP progresses to stage IV (exposed bone)

involve trying to realign the knee to stop the rubbing or grinding, whatever

is causing the damage. They involve soft tissue (loosening/tightening the

ligaments in the knee) and bony realignments (cutting into the tibia and

using screws to move a piece up/down/over to change the knee dynamics).

I don't know alot about Synvisc, it is an injection that helps lubricate the

joint, I think it's useful only before bone is exposed, but hopefully

someone who knows more about it will chime in.

Once the cartilage is gone (stage IV), the options are bleak.

Microfracture/abrasion/drilling are all methods that involve getting the

stem cells from the bone marrow to seep up and form a clot in the gap which

forms a cartilage scar tissue.

Various forms of cartilage transplant, either from a cadaver, from another

area of cartilage, or the ACI/Carticel where cells are cultured from a small

biopsy that's taken and put back in the gap to grow.

both of the above options have a long recovery (12-18 months before normal

usage with sports & such)

Then there's partial or total knee replacement.

The longer you can stay active without cutting into the knee, the better.

Bracing, possibly with a patella buttress, can help for some people.

Ice is your friend, as are NSAIDs.

Swimming and low impact exercises.

Just my spare change, YMMV.

Meg.

On Nov 8, 2007 10:21 AM, <arbrador@...> wrote:

> Hello,

> I've had " chondromalacia " for about 3 months now. My doctor was

> Dye who believes that most of it is caused by synovitis but he still

> wanted to do surgery on me to clean it up and also have a torn

> meniscus on MRI. A second opinion said no way should I have surgery.

> 80% get better on their own with Alleve and intense PT to strengthen

> VMO. That's what I'm doing now and think it's a little better but

> still get pain under the kneecap and can't do any stair or hill

> climbing. Especially going down stairs is bad. Do many people get

> better by 6 months? When should I look into Synvsc? Will that help me?

> Should I have had surgery as Dye recommended?

> Thanks,

>

>

>

--

Truth is not determined by a majority vote. -- Doug Gwyn

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I have had the Synvisc. I do not remember being told any stage for my condition

but my Ortho wanted to do cortisone inject and I refused. This was my next

option. It replaces lost fluid from the knee capsule and is suppose to help

generate new fluid. I was told it either will work for you or it wont and they

were hoping to get 6-18 months of comfort. I have gotten several years out of it

and am only just now thinking about going back for another round. I am probably

one of the lucky ones. Although I have had this condition as long as I remember

I am not incapacitated by it or I refuse to be anyway.

When my son was 13 we went to Walt Disney World for our first time and I hit a

point in our vacation when I was in absolute agony but kept pushing. I would sit

frequently and seriously thought I was going to be crippled in one knee by the

time I got home. Every evening I would pop Advil and get up and go again the

next day. I have a fairly high tolerance to the pain.

Just my experience.

in NY

" Meg F. " <meghann.fearn@...> wrote: I

definitely recommend surgery as a last option. I haven't had the numerous

surgeries of some of the people I've talked to and seen online, but the one

I had about 15 years ago didn't help, and made things worse. It was a

lateral release, medial reef. I apparently have a genetic mal-tracking of

the patella, my L knee is also grinding, but the R knee that has had 2

injuries (both were blows to the side of the knee causing a partial

dislocation of the kneecap) and the release surgery is MUCH worse.

This last July, I had a diagnostic scope and cleanout and my OS took the

cartilage cells for the ACI/Carticel. Initially, the cleanout helped a lot,

but now 4 months later I'm having pain again and its worsening rapidly.

The surgical options before the CP progresses to stage IV (exposed bone)

involve trying to realign the knee to stop the rubbing or grinding, whatever

is causing the damage. They involve soft tissue (loosening/tightening the

ligaments in the knee) and bony realignments (cutting into the tibia and

using screws to move a piece up/down/over to change the knee dynamics).

I don't know alot about Synvisc, it is an injection that helps lubricate the

joint, I think it's useful only before bone is exposed, but hopefully

someone who knows more about it will chime in.

Once the cartilage is gone (stage IV), the options are bleak.

Microfracture/abrasion/drilling are all methods that involve getting the

stem cells from the bone marrow to seep up and form a clot in the gap which

forms a cartilage scar tissue.

Various forms of cartilage transplant, either from a cadaver, from another

area of cartilage, or the ACI/Carticel where cells are cultured from a small

biopsy that's taken and put back in the gap to grow.

both of the above options have a long recovery (12-18 months before normal

usage with sports & such)

Then there's partial or total knee replacement.

The longer you can stay active without cutting into the knee, the better.

Bracing, possibly with a patella buttress, can help for some people.

Ice is your friend, as are NSAIDs.

Swimming and low impact exercises.

Just my spare change, YMMV.

Meg.

On Nov 8, 2007 10:21 AM, <arbrador@...> wrote:

> Hello,

> I've had " chondromalacia " for about 3 months now. My doctor was

> Dye who believes that most of it is caused by synovitis but he still

> wanted to do surgery on me to clean it up and also have a torn

> meniscus on MRI. A second opinion said no way should I have surgery.

> 80% get better on their own with Alleve and intense PT to strengthen

> VMO. That's what I'm doing now and think it's a little better but

> still get pain under the kneecap and can't do any stair or hill

> climbing. Especially going down stairs is bad. Do many people get

> better by 6 months? When should I look into Synvsc? Will that help me?

> Should I have had surgery as Dye recommended?

> Thanks,

>

>

>

--

Truth is not determined by a majority vote. -- Doug Gwyn

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  • 2 months later...

>

> Hi- My name is Joyce Brown. I am 38 and was diagnosed with

carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor

syndrome...

>

> Long story short, in 8 years of hunting for the carcinoid tumor

(which can occur anywhere in the body) as a source of the syndrome -

no carcinoid tumor has ever been found. HOWEVER, early in the

diagnostic process, an adenoma was found on my left adrenal gland. No

biochemical workup was done (tunnel vision, I think, due to the hunt

for the carcinoid).

>

> An odd turn of events caused me to start researching the ol'

adrenal tumor - and I have been learning about Conn's syndrome for

the last week. I want to have my doc test me for it, but I need to

learn more about the clinical picture.

>

> My doc's have focused on carcinoid syndrome because of the facial

flushing I have - I can't find many references that talk about facial

flushing with Conn's syndrome - but I would like to know how common

that is.

>

> I will give a cliff notes version of my medical history - am

interested if any of you with Conn's syndrome have similar symptoms,

or if I am barking up the wrong tree...

>

> Symptoms:

>

> Palpitations

> Sinus tachycardia

> Fatigue, Fatigue, Fatigue - and more fatigue!!

> facial flushing

> hirsutism (I have a goatee that rival's my husband's)

> increased thirst

> increased urination

> Pre-eclampsia in pregnancy that hit like a runaway freight train

and couldn't be controlled - labile hypertension during pre-eclampsia

>

> Symptoms are triggered by exertion, eating - especially high carb

foods or foods high in tyramine, AND by postural changes from lying

down to sitting or standing - symptoms worsen when I am sitting or

standing for long periods of time. For last 8 years haven't been able

to tolerate even ,ong car trips - even with my husband driving - jsut

as a passenger, severe fatigue and mild to moderate flushing from

sitting upright for several hours. (early work-ups for orthostatic

conditions were negative - but I definitely have tachycardia when

rising from a lying down position- much improved on calcium channel

blockers)

>

> Symptoms:

> Hypertension, fatigue, etc moderately controlled with sandostatin

(a synthetic version of a natural hormone somatostatin) that acts as

a giant " off-switch " for endocrine systems (and I have recently

learned that it can control hyperaldosteronism - but it doesn't

control it as well as other meds and it doesn't control it as well as

it controls carcinoid syndrome).

>

> 2 months ago I started calcium channel blocker (Norvasc) to help

control exertion intolerance and exertion triggered tachycardia and

hypertension - amazing improvement in all " carcinoid symptoms " .

(calcium channnel blockers don't do a thing for carcinoid...)

>

> I traveled 420 miles each way for Thanksgiving this year with NO

fatigue. Then I traveled a total of 1200 miles over Christmas - a

three leg trip to my inlaws, then my parents, then home - NO fatigue.

>

> My husband and I have been amazed and shocked at this turn of

events. I have been weaning off the sandostatin - as I do every year

around this time for an octreoscan to hunt for the carcinoid tumor -

I feel so good I cannot believe it. The calcium channel blocker is

controlling all my symptoms so much better than the sandostatin -

which prompted me to dig a little deeper.

>

> So, the facial flushing is what has kept my docs lookimng for the

carcinoid - but I am beginning to think that the visible adrenal

tumor may be the culprit rather than the invisible carcinoid tumor...

>

> Any thoughts?

>

> I'd be especially interested in hearing from anyone who has facial

flushing, or women who have hirsutism (excess facial hair that is

stiff and dark - like a man's whiskers) or women who have had

uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism...

>

> Thanks!

>

> Joyce in Cinci

Dear Joyce,

Just posted about facial sweats. I had terrible facial sweats when

my PA returned about 6 months ago after removal of left adrenal

gland.I found an article that lists facial sweats as a symptom -

http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has

had facial hair and chest hair since her early 20's. She also had pre-

eclampsia during pregnancy. She takes 200mg spiro a day for about 20

years and it has controlled these symptoms. Interesting coincidence

with the spiro.

Good Luck, Jan

>

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Thanks, Jan, for the info!

---- ipscalifornia <jarrigo@...> wrote:

>

> >

> > Hi- My name is Joyce Brown. I am 38 and was diagnosed with

> carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor

> syndrome...

> >

> > Long story short, in 8 years of hunting for the carcinoid tumor

> (which can occur anywhere in the body) as a source of the syndrome -

> no carcinoid tumor has ever been found. HOWEVER, early in the

> diagnostic process, an adenoma was found on my left adrenal gland. No

> biochemical workup was done (tunnel vision, I think, due to the hunt

> for the carcinoid).

> >

> > An odd turn of events caused me to start researching the ol'

> adrenal tumor - and I have been learning about Conn's syndrome for

> the last week. I want to have my doc test me for it, but I need to

> learn more about the clinical picture.

> >

> > My doc's have focused on carcinoid syndrome because of the facial

> flushing I have - I can't find many references that talk about facial

> flushing with Conn's syndrome - but I would like to know how common

> that is.

> >

> > I will give a cliff notes version of my medical history - am

> interested if any of you with Conn's syndrome have similar symptoms,

> or if I am barking up the wrong tree...

> >

> > Symptoms:

> >

> > Palpitations

> > Sinus tachycardia

> > Fatigue, Fatigue, Fatigue - and more fatigue!!

> > facial flushing

> > hirsutism (I have a goatee that rival's my husband's)

> > increased thirst

> > increased urination

> > Pre-eclampsia in pregnancy that hit like a runaway freight train

> and couldn't be controlled - labile hypertension during pre-eclampsia

> >

> > Symptoms are triggered by exertion, eating - especially high carb

> foods or foods high in tyramine, AND by postural changes from lying

> down to sitting or standing - symptoms worsen when I am sitting or

> standing for long periods of time. For last 8 years haven't been able

> to tolerate even ,ong car trips - even with my husband driving - jsut

> as a passenger, severe fatigue and mild to moderate flushing from

> sitting upright for several hours. (early work-ups for orthostatic

> conditions were negative - but I definitely have tachycardia when

> rising from a lying down position- much improved on calcium channel

> blockers)

> >

> > Symptoms:

> > Hypertension, fatigue, etc moderately controlled with sandostatin

> (a synthetic version of a natural hormone somatostatin) that acts as

> a giant " off-switch " for endocrine systems (and I have recently

> learned that it can control hyperaldosteronism - but it doesn't

> control it as well as other meds and it doesn't control it as well as

> it controls carcinoid syndrome).

> >

> > 2 months ago I started calcium channel blocker (Norvasc) to help

> control exertion intolerance and exertion triggered tachycardia and

> hypertension - amazing improvement in all " carcinoid symptoms " .

> (calcium channnel blockers don't do a thing for carcinoid...)

> >

> > I traveled 420 miles each way for Thanksgiving this year with NO

> fatigue. Then I traveled a total of 1200 miles over Christmas - a

> three leg trip to my inlaws, then my parents, then home - NO fatigue.

> >

> > My husband and I have been amazed and shocked at this turn of

> events. I have been weaning off the sandostatin - as I do every year

> around this time for an octreoscan to hunt for the carcinoid tumor -

> I feel so good I cannot believe it. The calcium channel blocker is

> controlling all my symptoms so much better than the sandostatin -

> which prompted me to dig a little deeper.

> >

> > So, the facial flushing is what has kept my docs lookimng for the

> carcinoid - but I am beginning to think that the visible adrenal

> tumor may be the culprit rather than the invisible carcinoid tumor...

> >

> > Any thoughts?

> >

> > I'd be especially interested in hearing from anyone who has facial

> flushing, or women who have hirsutism (excess facial hair that is

> stiff and dark - like a man's whiskers) or women who have had

> uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism...

> >

> > Thanks!

> >

> > Joyce in Cinci

>

> Dear Joyce,

>

> Just posted about facial sweats. I had terrible facial sweats when

> my PA returned about 6 months ago after removal of left adrenal

> gland.I found an article that lists facial sweats as a symptom -

> http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has

> had facial hair and chest hair since her early 20's. She also had pre-

> eclampsia during pregnancy. She takes 200mg spiro a day for about 20

> years and it has controlled these symptoms. Interesting coincidence

> with the spiro.

>

> Good Luck, Jan

> >

>

>

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Not enough to go on here yet without a bit of blood work. Do you have

a recent Aldosterone-Renin Ratio? Have you trialed spirinolactone?

On 1/16/08, carcinoidnews@... <carcinoidnews@...> wrote:

> Thanks, Jan, for the info!

>

> ---- ipscalifornia <jarrigo@...> wrote:

> >

> > >

> > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with

> > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor

> > syndrome...

> > >

> > > Long story short, in 8 years of hunting for the carcinoid tumor

> > (which can occur anywhere in the body) as a source of the syndrome -

> > no carcinoid tumor has ever been found. HOWEVER, early in the

> > diagnostic process, an adenoma was found on my left adrenal gland. No

> > biochemical workup was done (tunnel vision, I think, due to the hunt

> > for the carcinoid).

> > >

> > > An odd turn of events caused me to start researching the ol'

> > adrenal tumor - and I have been learning about Conn's syndrome for

> > the last week. I want to have my doc test me for it, but I need to

> > learn more about the clinical picture.

> > >

> > > My doc's have focused on carcinoid syndrome because of the facial

> > flushing I have - I can't find many references that talk about facial

> > flushing with Conn's syndrome - but I would like to know how common

> > that is.

> > >

> > > I will give a cliff notes version of my medical history - am

> > interested if any of you with Conn's syndrome have similar symptoms,

> > or if I am barking up the wrong tree...

> > >

> > > Symptoms:

> > >

> > > Palpitations

> > > Sinus tachycardia

> > > Fatigue, Fatigue, Fatigue - and more fatigue!!

> > > facial flushing

> > > hirsutism (I have a goatee that rival's my husband's)

> > > increased thirst

> > > increased urination

> > > Pre-eclampsia in pregnancy that hit like a runaway freight train

> > and couldn't be controlled - labile hypertension during pre-eclampsia

> > >

> > > Symptoms are triggered by exertion, eating - especially high carb

> > foods or foods high in tyramine, AND by postural changes from lying

> > down to sitting or standing - symptoms worsen when I am sitting or

> > standing for long periods of time. For last 8 years haven't been able

> > to tolerate even ,ong car trips - even with my husband driving - jsut

> > as a passenger, severe fatigue and mild to moderate flushing from

> > sitting upright for several hours. (early work-ups for orthostatic

> > conditions were negative - but I definitely have tachycardia when

> > rising from a lying down position- much improved on calcium channel

> > blockers)

> > >

> > > Symptoms:

> > > Hypertension, fatigue, etc moderately controlled with sandostatin

> > (a synthetic version of a natural hormone somatostatin) that acts as

> > a giant " off-switch " for endocrine systems (and I have recently

> > learned that it can control hyperaldosteronism - but it doesn't

> > control it as well as other meds and it doesn't control it as well as

> > it controls carcinoid syndrome).

> > >

> > > 2 months ago I started calcium channel blocker (Norvasc) to help

> > control exertion intolerance and exertion triggered tachycardia and

> > hypertension - amazing improvement in all " carcinoid symptoms " .

> > (calcium channnel blockers don't do a thing for carcinoid...)

> > >

> > > I traveled 420 miles each way for Thanksgiving this year with NO

> > fatigue. Then I traveled a total of 1200 miles over Christmas - a

> > three leg trip to my inlaws, then my parents, then home - NO fatigue.

> > >

> > > My husband and I have been amazed and shocked at this turn of

> > events. I have been weaning off the sandostatin - as I do every year

> > around this time for an octreoscan to hunt for the carcinoid tumor -

> > I feel so good I cannot believe it. The calcium channel blocker is

> > controlling all my symptoms so much better than the sandostatin -

> > which prompted me to dig a little deeper.

> > >

> > > So, the facial flushing is what has kept my docs lookimng for the

> > carcinoid - but I am beginning to think that the visible adrenal

> > tumor may be the culprit rather than the invisible carcinoid tumor...

> > >

> > > Any thoughts?

> > >

> > > I'd be especially interested in hearing from anyone who has facial

> > flushing, or women who have hirsutism (excess facial hair that is

> > stiff and dark - like a man's whiskers) or women who have had

> > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism...

> > >

> > > Thanks!

> > >

> > > Joyce in Cinci

> >

> > Dear Joyce,

> >

> > Just posted about facial sweats. I had terrible facial sweats when

> > my PA returned about 6 months ago after removal of left adrenal

> > gland.I found an article that lists facial sweats as a symptom -

> > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has

> > had facial hair and chest hair since her early 20's. She also had pre-

> > eclampsia during pregnancy. She takes 200mg spiro a day for about 20

> > years and it has controlled these symptoms. Interesting coincidence

> > with the spiro.

> >

> > Good Luck, Jan

> > >

> >

> >

>

>

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Joyce,

The facial flushing sounds to me like Cushing's. I had Conn's and Cushing's.

Not sure which was worse. My face was always beet red and then came the weight

gain. I was cyclic so I went from one extreme to the other. I finally had to

have my adrenals out and had 8 bright yellow nodules on them. It will be 2 years

in May since surgery and I am now feeling good. It has been a long and hard

journey though, My face is fine now unless I get too warm, my blood pressure is

good too. The fatigue is getting some better but I'm not sure it will ever go

away. I have to take steroids and will for the rest of my life because of no

adrenal hormones.

Just thought it may be something you want to check out. Violet

carcinoidnews@... wrote:

Thanks, Jan, for the info!

---- ipscalifornia <jarrigo@...> wrote:

>

> >

> > Hi- My name is Joyce Brown. I am 38 and was diagnosed with

> carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor

> syndrome...

> >

> > Long story short, in 8 years of hunting for the carcinoid tumor

> (which can occur anywhere in the body) as a source of the syndrome -

> no carcinoid tumor has ever been found. HOWEVER, early in the

> diagnostic process, an adenoma was found on my left adrenal gland. No

> biochemical workup was done (tunnel vision, I think, due to the hunt

> for the carcinoid).

> >

> > An odd turn of events caused me to start researching the ol'

> adrenal tumor - and I have been learning about Conn's syndrome for

> the last week. I want to have my doc test me for it, but I need to

> learn more about the clinical picture.

> >

> > My doc's have focused on carcinoid syndrome because of the facial

> flushing I have - I can't find many references that talk about facial

> flushing with Conn's syndrome - but I would like to know how common

> that is.

> >

> > I will give a cliff notes version of my medical history - am

> interested if any of you with Conn's syndrome have similar symptoms,

> or if I am barking up the wrong tree...

> >

> > Symptoms:

> >

> > Palpitations

> > Sinus tachycardia

> > Fatigue, Fatigue, Fatigue - and more fatigue!!

> > facial flushing

> > hirsutism (I have a goatee that rival's my husband's)

> > increased thirst

> > increased urination

> > Pre-eclampsia in pregnancy that hit like a runaway freight train

> and couldn't be controlled - labile hypertension during pre-eclampsia

> >

> > Symptoms are triggered by exertion, eating - especially high carb

> foods or foods high in tyramine, AND by postural changes from lying

> down to sitting or standing - symptoms worsen when I am sitting or

> standing for long periods of time. For last 8 years haven't been able

> to tolerate even ,ong car trips - even with my husband driving - jsut

> as a passenger, severe fatigue and mild to moderate flushing from

> sitting upright for several hours. (early work-ups for orthostatic

> conditions were negative - but I definitely have tachycardia when

> rising from a lying down position- much improved on calcium channel

> blockers)

> >

> > Symptoms:

> > Hypertension, fatigue, etc moderately controlled with sandostatin

> (a synthetic version of a natural hormone somatostatin) that acts as

> a giant " off-switch " for endocrine systems (and I have recently

> learned that it can control hyperaldosteronism - but it doesn't

> control it as well as other meds and it doesn't control it as well as

> it controls carcinoid syndrome).

> >

> > 2 months ago I started calcium channel blocker (Norvasc) to help

> control exertion intolerance and exertion triggered tachycardia and

> hypertension - amazing improvement in all " carcinoid symptoms " .

> (calcium channnel blockers don't do a thing for carcinoid...)

> >

> > I traveled 420 miles each way for Thanksgiving this year with NO

> fatigue. Then I traveled a total of 1200 miles over Christmas - a

> three leg trip to my inlaws, then my parents, then home - NO fatigue.

> >

> > My husband and I have been amazed and shocked at this turn of

> events. I have been weaning off the sandostatin - as I do every year

> around this time for an octreoscan to hunt for the carcinoid tumor -

> I feel so good I cannot believe it. The calcium channel blocker is

> controlling all my symptoms so much better than the sandostatin -

> which prompted me to dig a little deeper.

> >

> > So, the facial flushing is what has kept my docs lookimng for the

> carcinoid - but I am beginning to think that the visible adrenal

> tumor may be the culprit rather than the invisible carcinoid tumor...

> >

> > Any thoughts?

> >

> > I'd be especially interested in hearing from anyone who has facial

> flushing, or women who have hirsutism (excess facial hair that is

> stiff and dark - like a man's whiskers) or women who have had

> uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism...

> >

> > Thanks!

> >

> > Joyce in Cinci

>

> Dear Joyce,

>

> Just posted about facial sweats. I had terrible facial sweats when

> my PA returned about 6 months ago after removal of left adrenal

> gland.I found an article that lists facial sweats as a symptom -

> http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has

> had facial hair and chest hair since her early 20's. She also had pre-

> eclampsia during pregnancy. She takes 200mg spiro a day for about 20

> years and it has controlled these symptoms. Interesting coincidence

> with the spiro.

>

> Good Luck, Jan

> >

>

>

---------------------------------

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Thanks - I appreciate the tips -

I had the Cushing's tested for about 8 years ago - negative - but my current doc

(an oncologist with a strong internal med background) is running a complete

workup on my adrenals as a preliminary and lining me up with a good local

endocrinologist - so I am glad I brought it up to him. Went through so much

testing years ago that I wasn't anxious to go on a wild goose chase - bbut my

doc thinks it's definitely worht looking into.

Thanks for your reply!

Joyce in Cinci

---- Violet Umber <viumber@...> wrote:

> Joyce,

> The facial flushing sounds to me like Cushing's. I had Conn's and Cushing's.

Not sure which was worse. My face was always beet red and then came the weight

gain. I was cyclic so I went from one extreme to the other. I finally had to

have my adrenals out and had 8 bright yellow nodules on them. It will be 2 years

in May since surgery and I am now feeling good. It has been a long and hard

journey though, My face is fine now unless I get too warm, my blood pressure is

good too. The fatigue is getting some better but I'm not sure it will ever go

away. I have to take steroids and will for the rest of my life because of no

adrenal hormones.

>

> Just thought it may be something you want to check out. Violet

>

> carcinoidnews@... wrote:

> Thanks, Jan, for the info!

>

> ---- ipscalifornia <jarrigo@...> wrote:

> >

> > >

> > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with

> > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor

> > syndrome...

> > >

> > > Long story short, in 8 years of hunting for the carcinoid tumor

> > (which can occur anywhere in the body) as a source of the syndrome -

> > no carcinoid tumor has ever been found. HOWEVER, early in the

> > diagnostic process, an adenoma was found on my left adrenal gland. No

> > biochemical workup was done (tunnel vision, I think, due to the hunt

> > for the carcinoid).

> > >

> > > An odd turn of events caused me to start researching the ol'

> > adrenal tumor - and I have been learning about Conn's syndrome for

> > the last week. I want to have my doc test me for it, but I need to

> > learn more about the clinical picture.

> > >

> > > My doc's have focused on carcinoid syndrome because of the facial

> > flushing I have - I can't find many references that talk about facial

> > flushing with Conn's syndrome - but I would like to know how common

> > that is.

> > >

> > > I will give a cliff notes version of my medical history - am

> > interested if any of you with Conn's syndrome have similar symptoms,

> > or if I am barking up the wrong tree...

> > >

> > > Symptoms:

> > >

> > > Palpitations

> > > Sinus tachycardia

> > > Fatigue, Fatigue, Fatigue - and more fatigue!!

> > > facial flushing

> > > hirsutism (I have a goatee that rival's my husband's)

> > > increased thirst

> > > increased urination

> > > Pre-eclampsia in pregnancy that hit like a runaway freight train

> > and couldn't be controlled - labile hypertension during pre-eclampsia

> > >

> > > Symptoms are triggered by exertion, eating - especially high carb

> > foods or foods high in tyramine, AND by postural changes from lying

> > down to sitting or standing - symptoms worsen when I am sitting or

> > standing for long periods of time. For last 8 years haven't been able

> > to tolerate even ,ong car trips - even with my husband driving - jsut

> > as a passenger, severe fatigue and mild to moderate flushing from

> > sitting upright for several hours. (early work-ups for orthostatic

> > conditions were negative - but I definitely have tachycardia when

> > rising from a lying down position- much improved on calcium channel

> > blockers)

> > >

> > > Symptoms:

> > > Hypertension, fatigue, etc moderately controlled with sandostatin

> > (a synthetic version of a natural hormone somatostatin) that acts as

> > a giant " off-switch " for endocrine systems (and I have recently

> > learned that it can control hyperaldosteronism - but it doesn't

> > control it as well as other meds and it doesn't control it as well as

> > it controls carcinoid syndrome).

> > >

> > > 2 months ago I started calcium channel blocker (Norvasc) to help

> > control exertion intolerance and exertion triggered tachycardia and

> > hypertension - amazing improvement in all " carcinoid symptoms " .

> > (calcium channnel blockers don't do a thing for carcinoid...)

> > >

> > > I traveled 420 miles each way for Thanksgiving this year with NO

> > fatigue. Then I traveled a total of 1200 miles over Christmas - a

> > three leg trip to my inlaws, then my parents, then home - NO fatigue.

> > >

> > > My husband and I have been amazed and shocked at this turn of

> > events. I have been weaning off the sandostatin - as I do every year

> > around this time for an octreoscan to hunt for the carcinoid tumor -

> > I feel so good I cannot believe it. The calcium channel blocker is

> > controlling all my symptoms so much better than the sandostatin -

> > which prompted me to dig a little deeper.

> > >

> > > So, the facial flushing is what has kept my docs lookimng for the

> > carcinoid - but I am beginning to think that the visible adrenal

> > tumor may be the culprit rather than the invisible carcinoid tumor...

> > >

> > > Any thoughts?

> > >

> > > I'd be especially interested in hearing from anyone who has facial

> > flushing, or women who have hirsutism (excess facial hair that is

> > stiff and dark - like a man's whiskers) or women who have had

> > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism...

> > >

> > > Thanks!

> > >

> > > Joyce in Cinci

> >

> > Dear Joyce,

> >

> > Just posted about facial sweats. I had terrible facial sweats when

> > my PA returned about 6 months ago after removal of left adrenal

> > gland.I found an article that lists facial sweats as a symptom -

> > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has

> > had facial hair and chest hair since her early 20's. She also had pre-

> > eclampsia during pregnancy. She takes 200mg spiro a day for about 20

> > years and it has controlled these symptoms. Interesting coincidence

> > with the spiro.

> >

> > Good Luck, Jan

> > >

> >

> >

>

>

>

>

>

>

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

> Looking for last minute shopping deals? Find them fast with Search.

>

>

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Assume you have been tested for pheochromocytoma as well?

Classically PA gets better during pregnancy.

I have never heard of treating an undiagnosed carcinoid with

sandostatin. I would call this bad judgement.

Sounds like you may have an orthostatic hypotension problem. Have you

been tested for this. There is a good autonomic insufficiency site

in our links as I recall.

You need to have a blood renin and aldosterone checked. I know an

excellent Endo in Lexington who could likely get you figured out.

Can you drive down there?

On Jan 18, 2008, at 7:00 PM, <carcinoidnews@...> wrote:

> Symptoms:

> > > >

> > > > Palpitations

> > > > Sinus tachycardia

> > > > Fatigue, Fatigue, Fatigue - and more fatigue!!

> > > > facial flushing

> > > > hirsutism (I have a goatee that rival's my husband's)

> > > > increased thirst

> > > > increased urination

> > > > Pre-eclampsia in pregnancy that hit like a runaway freight train

> > > and couldn't be controlled - labile hypertension during pre-

> eclampsia

> > > >

> > > > Symptoms are triggered by exertion, eating - especially high

> carb

> > > foods or foods high in tyramine, AND by postural changes from

> lying

> > > down to sitting or standing - symptoms worsen when I am sitting or

> > > standing for long periods of time. For last 8 years haven't

> been able

> > > to tolerate even ,ong car trips - even with my husband driving

> - jsut

> > > as a passenger, severe fatigue and mild to moderate flushing from

> > > sitting upright for several hours. (early work-ups for orthostatic

> > > conditions were negative - but I definitely have tachycardia when

> > > rising from a lying down position- much improved on calcium

> channel

> > > blockers)

> > > >

> > > > Symptoms:

> > > > Hypertension, fatigue, etc moderately controlled with

> sandostatin

> > > (a synthetic version of a natural hormone somatostatin) that

> acts as

> > > a giant " off-switch " for endocrine systems (and I have recently

> > > learned that it can control hyperaldosteronism - but it doesn't

> > > control it as well as other meds and it doesn't control it as

> well as

> > > it controls carcinoid syndrome).

> > > >

> > > > 2 months ago I started calcium channel blocker (Norvasc) to help

> > > control exertion intolerance and exertion triggered tachycardia

> and

> > > hypertension - amazing improvement in all " carcinoid symptoms " .

> > > (calcium channnel blockers don't do a thing for carcinoid...)

> > > >

> > > > I traveled 420 miles each way for Thanksgiving this year with NO

> > > fatigue. Then I traveled a total of 1200 miles over Christmas - a

> > > three leg trip to my inlaws, then my parents, then home - NO

> fatigue.

> > > >

> > > > My husband and I have been amazed and shocked at this turn of

> > > events. I have been weaning off the sandostatin - as I do every

> year

> > > around this time for an octreoscan to hunt for the carcinoid

> tumor -

> > > I feel so good I cannot believe it. The calcium channel blocker is

> > > controlling all my symptoms so much better than the sandostatin -

> > > which prompted me to dig a little deeper.

> > > >

> > > > So, the facial flushing is what has kept my docs lookimng for

> the

> > > carcinoid - but I am beginning to think that the visible adrenal

> > > tumor may be the culprit rather than the invisible carcinoid

> tumor...

> > > >

> > > > Any thoughts?

> > > >

> > > > I'd be especially interested in hearing from anyone who has

> facial

> > > flushing, or women who have hirsutism (excess facial hair that is

> > > stiff and dark - like a man's whiskers) or women who have had

> > > uncontrollable pre-eclampsia in pregnancy due to

> hyperaldosteronism...

> > > >

> > > > Thanks!

> > > >

> > > > Joyce in Cinci

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Hi!

Yes - the pheo was tested for extensively several years ago - the NIH even did

some testing for my docs - it was (then ) a new test - if I remember right it

was for metanephrines and normetanephrines... all tests conclusively negative.

Nobody could figure out the source of the sinus tachycardia and the labile

hypertension (which pre-pregnancy was mild).

Fairly extensive testing for orthostatic type problems as well - on Tilt table

my HR went up but my BP went up as well too - they were looking for a drop in

BP.

I definitely don't present a classical picture of Conn's - which is why my left

adrenal tumor has been sitting there without looking into it. My hypertension

has been only labile - BUT I have been on boatloads of drugs for the sinus tach

- which would also help lower BP - PLUS I have an ultra low sodium diet - I

probably average around 1000mg a day.

Anyway, my mom had hypertension ever since I was little (as did her mom- early

onset of hypertension in 30's despite not being overweight, not being sedentary,

not smoking, etc) so I grew up with my mom cooking without salt etc - I don't

really like the taste of salt - I rarely eat any processed food. We figured out

a connection between processed food and my extreme post-prandial fatigue

symptoms a few years ago and cutting out processed foods and rarely eating

restaurant food really helped improve my symptoms as well....

I also have this weird symptom of fluid weight gain without edema - docs were

quite stumped when this first started happening in pregnancy - I would put on

5-10 pounds a day in fluid - no clinical edema - then it would diurese away.

They actually put me in the hospital to verify this because one of the docs in

the group thought I was just a nervous first-time mom. I still have the fluid

weight gain without edema thing going on - but it always goes away when I lie

down for awhile - I pee it all off. And it's not nearly as bad as the fluid

weight gains in pregnancy.

I have also been tested for some rare kind of inheritied swelling problem

(angioedema I think) - my mom who has severe difficult to control hypertension

and now has diabetes and coronary artery disease (and just had 2 heart attacks

at age 65) - she swells like that too. Fluid weight gain without edema.

So my onco is doing a complete preliminary workup for the Conn's - if this turns

out negative then I would definitely be interested in seeing your endo in

Lexington-much closer than my carcinoid experts in N.Y. and La. !!

Yes, you are also right that carcinoid is VERY RARELY ever treated with sando

without a confirmed histopath dx - but that's mainly because it usually isn't

diagnosed until its metastatic and incurable - it's rare to find the tumors

prior to metastasis - and also rare to have syndrome without mets. I won't bore

the group with the whys of that. My urine 5-HIAA tests have consistent mild

elevations (which decrease to low normal on sando) and when I first started the

octreoscans- I had such an improvement in symptoms that my doc conferred with

the carcinoid experts and decided it was worth a trial response to sando... -

very positive repsonse but still struggle with fatigue issues and am limited in

regards to exertion, stamina, etc - but sando took me from bed-ridden to having

a life and even being able to return to work part-time so all docs concurred

that it was worth staying on the sando while we tried to figure things out. I

have been simply took sick tolive without it - fatgie so bad that if you put a

gun to my head I couldn';t get up. Fall asleep in broad daylight when I don't

want to, but cannot help it. (not a sudden narcolepsy thing, just overwhelming

sleepiness and fatigue).

So the final consensus was that I probably have a small benign carcinoid that

isn't big enough (needs to be 1cm or greater) to show up on o-scan and that the

sando may keep it from growing any larger so we may never find it. And I

couldn't deal with the continual diagnostic process anymore. I got to the point

where if the meds controlled it, I didn't care what it was. I had a young

special needs daughter (issues from being born 12 weeks early), I was worried

that if I didn't return to practice soon, I would reach a point where I had been

out so long I wouldn't be able to go back (I am a vet), and I just wanted a life

again. I was tired of imitating a lab rat, REALLY tired of having specialists

take on my case only to say " you are a really interesting case... but I have no

idea what is wrong with you " . I was so sick without the sando and so much better

with it that my docs agreed to take a break from the diagnostics with the

exception of yearly follow-up testing to look for the tumor (and monthly

checkups with my sando treatments).

But in the seven years on sando, I haven't been back on calcium channel blockers

until a couple months ago - I went off all drugs during pregnancy, then after

went on beta-blockers becuase it was safer for nursing - we never really thought

there might be a connection with the calcium channel blockers.

And now that I am off the sando completely, I am drinking and peeing like a

racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times

in the middle of the night and also very thirsty in the middle of the night...

Anyway, thank you all so much for the responses - am waiting on the blood

results which were just drawn Friday, and I have a urine jug to fill up tomorrow

and take in on Tuesday, so within a couple weeks I should at least have some

pre-lim answers.

And, Dr. Grimm, thanks so much - I will definitely be asking you for the Endo

contact in Lexington if this doesn't pan out.

Also, my thanks to the group for listening and answering - I am putting the cart

before the horse here, but I was reluctant to " open pandora's box " with respect

to going on another round of diagnostics, and potentially more wild goose

chases. I will definitely keep you guys posted on the test results- And if

negative I apologize in advance for wasting your time! And I won't write such

long emails anymore!! :)

Sincerely,

Joyce in Cinci

---- Clarence Grim <lowerbp2@...> wrote:

> Assume you have been tested for pheochromocytoma as well?

>

>

> Classically PA gets better during pregnancy.

>

> I have never heard of treating an undiagnosed carcinoid with

> sandostatin. I would call this bad judgement.

>

> Sounds like you may have an orthostatic hypotension problem. Have you

> been tested for this. There is a good autonomic insufficiency site

> in our links as I recall.

>

> You need to have a blood renin and aldosterone checked. I know an

> excellent Endo in Lexington who could likely get you figured out.

> Can you drive down there?

>

>

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" And now that I am off the sando completely, I am drinking and peeing like a

racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times

in the middle of the night and also very thirsty in the middle of the night... "

That is a symptom of PA.

Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, especially,

likes to have everyone write his or her story and put it in the files section of

the group. You can see a few other stories there. I hope you will

consider doing that.

Even if you don't have PA, we all learn from the posts of others.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@...

[snip]And now that I am off the sando completely, I am drinking and peeing like

a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2

times in the middle of the night and also very thirsty in the middle of the

night...

[snip]Also, my thanks to the group for listening and answering - I am putting

the cart before the horse here, but I was reluctant to " open pandora's box " with

respect to going on another round of diagnostics, and potentially more wild

goose chases. I will definitely keep you guys posted on the test results- And if

negative I apologize in advance for wasting your time! And I won't write such

long emails anymore!! :)

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This sounds like a problem due to PA. Has your K ever been low?

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jan 20, 2008, at 1:29 PM, Valarie wrote:

> " And now that I am off the sando completely, I am drinking and

> peeing like a racehorse!! - I was PU/PD before sando but not this

> bad - I am now up 1-2 times in the middle of the night and also

> very thirsty in the middle of the night... "

>

> That is a symptom of PA.

>

> Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

> especially, likes to have everyone write his or her story and put

> it in the files section of the group. You can see a few other

> stories there. I hope you will consider doing that.

>

> Even if you don't have PA, we all learn from the posts of others.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of

> carcinoidnews@...

>

> [snip]And now that I am off the sando completely, I am drinking and

> peeing like a racehorse!! - I was PU/PD before sando but not this

> bad - I am now up 1-2 times in the middle of the night and also

> very thirsty in the middle of the night...

>

> [snip]Also, my thanks to the group for listening and answering - I

> am putting the cart before the horse here, but I was reluctant to

> " open pandora's box " with respect to going on another round of

> diagnostics, and potentially more wild goose chases. I will

> definitely keep you guys posted on the test results- And if

> negative I apologize in advance for wasting your time! And I won't

> write such long emails anymore!! :)

>

>

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Years ago- back in college when my childhood symptoms got worse (had been

diagnosed tas " hypoglycemic due to postt-prandial/poast-carb intolerance - but

without the benefit of a glucose tolerance test " , I went to the student clinic

(which I now affectionately refer to as the student quack shack :) I had some

numbness and tingling in my hands/forearms - and I think I was a bit PU/PD then

as well, - my doc said my potassium was low and to eat lots of bananas...

So I have always eaten a diet high in potassium since then - bananas and spinach

especially...

Never really thought about it again til talking to my onco Fri - and I mentioned

this - should'a seen the look on his face!

haven't had a low K+ since - but that is being checked now too...

Joyce in Cinci

---- Grim Clarence <lowerbp2@...> wrote:

> This sounds like a problem due to PA. Has your K ever been low?

>

>

> CE Grim MS, MD

> High Blood Pressure Consulting

>

> Clnical Professor of Medicine Medical Colege of Wisconsin

>

> Board certified in Internal Med, Geritrics and Hypertension.

>

> Interests: The effect of recent evolutionary forces on high blood

> pressure in human populations.

>

>

>

>

> On Jan 20, 2008, at 1:29 PM, Valarie wrote:

>

> > " And now that I am off the sando completely, I am drinking and

> > peeing like a racehorse!! - I was PU/PD before sando but not this

> > bad - I am now up 1-2 times in the middle of the night and also

> > very thirsty in the middle of the night... "

> >

> > That is a symptom of PA.

> >

> > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

> > especially, likes to have everyone write his or her story and put

> > it in the files section of the group. You can see a few other

> > stories there. I hope you will consider doing that.

> >

> > Even if you don't have PA, we all learn from the posts of others.

> >

> > Val

> >

> > From: hyperaldosteronism

> > [mailto:hyperaldosteronism ] On Behalf Of

> > carcinoidnews@...

> >

> > [snip]And now that I am off the sando completely, I am drinking and

> > peeing like a racehorse!! - I was PU/PD before sando but not this

> > bad - I am now up 1-2 times in the middle of the night and also

> > very thirsty in the middle of the night...

> >

> > [snip]Also, my thanks to the group for listening and answering - I

> > am putting the cart before the horse here, but I was reluctant to

> > " open pandora's box " with respect to going on another round of

> > diagnostics, and potentially more wild goose chases. I will

> > definitely keep you guys posted on the test results- And if

> > negative I apologize in advance for wasting your time! And I won't

> > write such long emails anymore!! :)

> >

> >

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I will definitely do that if i come back positive. Plus, I will now go and read

some of those stories. Thanks!

---- Valarie <val@...> wrote:

> " And now that I am off the sando completely, I am drinking and peeing like a

racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times

in the middle of the night and also very thirsty in the middle of the night... "

>

> That is a symptom of PA.

>

> Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

especially, likes to have everyone write his or her story and put it in the

files section of the group. You can see a few other stories there. I

hope you will consider doing that.

>

> Even if you don't have PA, we all learn from the posts of others.

>

> Val

>

> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@...

>

> [snip]And now that I am off the sando completely, I am drinking and peeing

like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2

times in the middle of the night and also very thirsty in the middle of the

night...

>

> [snip]Also, my thanks to the group for listening and answering - I am putting

the cart before the horse here, but I was reluctant to " open pandora's box " with

respect to going on another round of diagnostics, and potentially more wild

goose chases. I will definitely keep you guys posted on the test results- And if

negative I apologize in advance for wasting your time! And I won't write such

long emails anymore!! :)

>

>

>

>

>

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I think everyone would appreciate your story, even if you don't end up having

PA. Trying to track down these related conditions is like trying to catch a

fast mouse, bare-handed. It helps to read others' stories.

Val

-----Original Message-----

From: carcinoidnews@... [mailto:carcinoidnews@...]

I will definitely do that if i come back positive. Plus, I will now go and read

some of those stories. Thanks!

---- Valarie <val@...> wrote:

>

> Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

especially, likes to have everyone write his or her story and put it in the

files section of the group. You can see a few other stories there. I

hope you will consider doing that.

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I will start working on it while waiting for test results then!

I cracked up over the mouse description - that was great!

Joyce in Cinci

---- Valarie <val@...> wrote:

> I think everyone would appreciate your story, even if you don't end up having

PA. Trying to track down these related conditions is like trying to catch a

fast mouse, bare-handed. It helps to read others' stories.

>

> Val

>

> -----Original Message-----

> From: carcinoidnews@... [mailto:carcinoidnews@...]

>

> I will definitely do that if i come back positive. Plus, I will now go and

read some of those stories. Thanks!

>

> ---- Valarie <val@...> wrote:

> >

> > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

especially, likes to have everyone write his or her story and put it in the

files section of the group. You can see a few other stories there. I

hope you will consider doing that.

>

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You almost certainly have PA. Read my paper on the evolution of PA.

Not sure what you mean by PU/PD.

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jan 20, 2008, at 3:01 PM, carcinoidnews@... wrote:

> Years ago- back in college when my childhood symptoms got worse

> (had been diagnosed tas " hypoglycemic due to postt-prandial/poast-

> carb intolerance - but without the benefit of a glucose tolerance

> test " , I went to the student clinic (which I now affectionately

> refer to as the student quack shack :) I had some numbness and

> tingling in my hands/forearms - and I think I was a bit PU/PD then

> as well, - my doc said my potassium was low and to eat lots of

> bananas...

>

> So I have always eaten a diet high in potassium since then -

> bananas and spinach especially...

>

> Never really thought about it again til talking to my onco Fri -

> and I mentioned this - should'a seen the look on his face!

> haven't had a low K+ since - but that is being checked now too...

>

> Joyce in Cinci

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I remember the hapless nephrologist who Dx'd my PA by accident of not

having heard the American water cooler gossip to " forget about it - so

rare " because of doing internship in UK. He ran the a/r series - blood

and urine - only.

He told me to eat bananas, etc. too. Later when my K kept dropping he'd

done more research (in UK) and said " I was wrong - with PA dietary K

won't help unless you block the aldo recptor. " Ignored Na whose dietary

content does matter, and calcium/magnesium imbalances (high and low

respectively), forgot the other electrolytes in all the excitement

becoming the County Hospital's " expert on hypertension " for having found

a 'rare' case.

Even K-Dur wasn't much help past the 3-4 hrs it's designed to act.

Other band-aids that were useless, but doctors continued Rx'ing -

included clonidine, nifedipine, etc. Short-term fixes that rebounded BP

worse.

No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect.

Months lost. Still didn't give aldo blocker or say a word about Na in

my diet. 4 more years, into LVH and stage 4 PA.

Unfortunately this is standard institutional behavior. Ask 'em for

dexamethasone for quick BP & K fix, and aldactone for a couple weeks

while you measure K often and record your BP 3-4xday and find a doctor

who knows PA.

IMO

Dave

carcinoidnews@... wrote:

>

> Years ago- back in college when my childhood symptoms got worse (had

> been diagnosed tas " hypoglycemic due to postt-prandial/poast-carb

> intolerance - but without the benefit of a glucose tolerance test " , I

> went to the student clinic (which I now affectionately refer to as the

> student quack shack :) I had some numbness and tingling in my

> hands/forearms - and I think I was a bit PU/PD then as well, - my doc

> said my potassium was low and to eat lots of bananas...

>

> So I have always eaten a diet high in potassium since then - bananas

> and spinach especially...

>

> Never really thought about it again til talking to my onco Fri - and I

> mentioned this - should'a seen the look on his face!

> haven't had a low K+ since - but that is being checked now too...

>

> Joyce in Cinci

>

> ---- Grim Clarence <lowerbp2@... <mailto:lowerbp2%40mac.com>> wrote:

> > This sounds like a problem due to PA. Has your K ever been low?

> >

> >

> > CE Grim MS, MD

> > High Blood Pressure Consulting

> >

> > Clnical Professor of Medicine Medical Colege of Wisconsin

> >

> > Board certified in Internal Med, Geritrics and Hypertension.

> >

> > Interests: The effect of recent evolutionary forces on high blood

> > pressure in human populations.

> >

> >

> >

> >

> > On Jan 20, 2008, at 1:29 PM, Valarie wrote:

> >

> > > " And now that I am off the sando completely, I am drinking and

> > > peeing like a racehorse!! - I was PU/PD before sando but not this

> > > bad - I am now up 1-2 times in the middle of the night and also

> > > very thirsty in the middle of the night... "

> > >

> > > That is a symptom of PA.

> > >

> > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim,

> > > especially, likes to have everyone write his or her story and put

> > > it in the files section of the group. You can see a few other

> > > stories there. I hope you will consider doing that.

> > >

> > > Even if you don't have PA, we all learn from the posts of others.

> > >

> > > Val

> > >

> > > From: hyperaldosteronism

> <mailto:hyperaldosteronism%40>

> > > [mailto:hyperaldosteronism

> <mailto:hyperaldosteronism%40>] On Behalf Of

> > > carcinoidnews@... <mailto:carcinoidnews%40fuse.net>

> > >

> > > [snip]And now that I am off the sando completely, I am drinking and

> > > peeing like a racehorse!! - I was PU/PD before sando but not this

> > > bad - I am now up 1-2 times in the middle of the night and also

> > > very thirsty in the middle of the night...

> > >

> > > [snip]Also, my thanks to the group for listening and answering - I

> > > am putting the cart before the horse here, but I was reluctant to

> > > " open pandora's box " with respect to going on another round of

> > > diagnostics, and potentially more wild goose chases. I will

> > > definitely keep you guys posted on the test results- And if

> > > negative I apologize in advance for wasting your time! And I won't

> > > write such long emails anymore!! :)

> > >

> > > [

>

>

>

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Read just the snippets I left of Dave's message. Do these doctors never

read? Dave, how long ago did you have the surgery?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Dave

I remember the hapless nephrologist who Dx'd my PA by accident

He told me to eat bananas, etc. too.

Ignored Na whose dietary

Even K-Dur wasn't much help past the 3-4 hrs it's designed to act.

doctors continued Rx'ing - included clonidine, nifedipine, etc.

No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect.

Months lost.

Still didn't give aldo blocker or say a word about Na in my diet.

4 more years, into LVH and stage 4 PA.

Unfortunately this is standard institutional behavior.

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---- Grim Clarence <lowerbp2@...> wrote:

> You almost certainly have PA. Read my paper on the evolution of PA.

>

> Not sure what you mean by PU/PD.

OOPS! That's the vet in me talking - that's the abbreviation we use for

polyuric/polydipsic eg increased thirst / increased urination.

Read the paper - it's very interesting - and makes a lot of sense.

Joyce in Cinci

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Valarie wrote:

>

> Read just the snippets I left of Dave's message. Do these doctors never

> read? Dave, how long ago did you have the surgery?

>

Dec 99

>

> Val

>

> From: hyperaldosteronism

> <mailto:hyperaldosteronism%40>

> [mailto:hyperaldosteronism

> <mailto:hyperaldosteronism%40>] On Behalf Of Dave

>

> I remember the hapless nephrologist who Dx'd my PA by accident

>

> He told me to eat bananas, etc. too.

>

> Ignored Na whose dietary

>

> Even K-Dur wasn't much help past the 3-4 hrs it's designed to act.

>

> doctors continued Rx'ing - included clonidine, nifedipine, etc.

>

> No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect.

>

> Months lost.

>

> Still didn't give aldo blocker or say a word about Na in my diet.

>

> 4 more years, into LVH and stage 4 PA.

>

> Unfortunately this is standard institutional behavior.

>

>

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  • 8 months later...

Congratulations! You are in for a world of joy! :)

As for walking, don't sweat it. My daughter didn't walk until she was 4, but

she was the fastest commando crawler ever! As for talking, he's a boy,

they're usually a little later anyway. It will come.

Welcome aboard! :)

Eleanor

_____

From: [mailto: ] On Behalf

Of mreid518

Sent: Wednesday, October 08, 2008 12:26 PM

Subject: new to group

Hello!! My name is Miriam and I have been in the group for a couple of

weeeks and didn't know what to say. I have a cousin, Jayden, whom we

love so much!!!!!!!!!!! He has traditional trisomy 21 and was born

with a heart defect but happy to say that after he had his surgery he

is doing wonderful now. He is two and very active. He is in early

intervention and it seems to be helping but he still doesn't walk or

speak any words yet. I joined the group so that I can learn everything

I can to help me to better understand the things he may go through.

Thank you for having me and I am willing to answer any questions if

any. I would post a picture once I fiqure out how.

Thank you

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Ditto on walking.... didn't walk until she was over 3

(although the PT said she could, chose not to, LOL) She'd

take a couple steps, but didn't actually walk until the day she figured

out how to stand up from a sit on the floor.... she got herself up, and

it was like a light went on... " Oh, I'm standing in the middle of the

room, so I guess I should just walk over to the couch " That was it, and

it wasn't long before we couldn't keep up with her :-)

You will likely find that our experiences with our children with DS are

both similar and different from each other.... although we all share the

extra chromosome, our children have wonderful and different

personalities, abilities, and needs. So, you will learn from reading

posts, but know that what is happening with other children may or may

not be in store for your cousin :-) Luckily, if you have questions,

there will be many who will be able to help because they too have gone

there too, so post away with your concerns!

is really a blessing to our family... she's funny, caring,

sweet, smart and opinionated. She's in 5th grade now, included at our

neighborhood school, and is (sadly) starting to turn in to a typical

tween girl.... full of her own opinions and is not afraid to tell anyone

what they are. She's a computer game addict, and has been downloading

free games from the internet for years now... we finally have software

in place to prevent this, but we are proud that she figured in out :-)

's in Girl Scouts with her friends from school, and pretty much

does what her sisters do, though on a smaller scale.... they each

participate in many activities and love being busy, where

likes to come home and relax in her room and read a book, or help me fix

dinner, rather than head to the soccer field.

Enjoy your baby cousin... he's lucky to have you in his life!

, mom to (12), (10 DS), and Sammy (9)

Eleanor Green wrote:

>

> Congratulations! You are in for a world of joy! :)

>

> As for walking, don't sweat it. My daughter didn't walk until she was

> 4, but

> she was the fastest commando crawler ever! As for talking, he's a boy,

> they're usually a little later anyway. It will come.

>

> Welcome aboard! :)

>

> Eleanor

>

> _____

>

> From: <mailto:%40>

> [mailto:

> <mailto:%40>] On Behalf

> Of mreid518

> Sent: Wednesday, October 08, 2008 12:26 PM

> <mailto:%40>

> Subject: new to group

>

> Hello!! My name is Miriam and I have been in the group for a couple of

> weeeks and didn't know what to say. I have a cousin, Jayden, whom we

> love so much!!!!!!!!!!! He has traditional trisomy 21 and was born

> with a heart defect but happy to say that after he had his surgery he

> is doing wonderful now. He is two and very active. He is in early

> intervention and it seems to be helping but he still doesn't walk or

> speak any words yet. I joined the group so that I can learn everything

> I can to help me to better understand the things he may go through.

> Thank you for having me and I am willing to answer any questions if

> any. I would post a picture once I fiqure out how.

>

> Thank you

>

>

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  • 1 year later...
Guest guest

Who makes the superfoods?KooLarryOn Fri, Jul 2, 2010 at 6:47 PM, <eradin0114@...> wrote:

 

Hello all..I just joined this group...Have made a Vita Mix machine for a few years but have not used it extensively.  Recently became interested in superfoods/raw foods and it seems that the Vitamix is the ideal tool.  I have purchased maca, hemp seed, coconut oil, coconut water, aloe vera juice, spirulina, bee pollen, cacao and goji berries.  Any suggestions on putting these together in a tasty fashion?  Also, is the $50 Vitamix cookbook worth the money?  Perhaps I can find a better value right here within this group.  Thanks. 

Elaine Radin

901.573.5454 - Cell

901.767.0686 - Home

231 Cloister Green Lane

Memphis, TN  38120

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Guest guest

I got the superfoods from Whole Foods or ordered from Vitacost. Maca and Cacao made by Navitas. Hemp seed from Nutiva. Goji berries from Natierra. Spirulina from Nutraceutical Sciences. Also highly recommended was Klamath Lake blue/green algae.

Elaine Radin

Re: New to group

Who makes the superfoods?

KooLarry

On Fri, Jul 2, 2010 at 6:47 PM, <eradin0114aol> wrote:

Hello all..I just joined this group...Have made a Vita Mix machine for a few years but have not used it extensively. Recently became interested in superfoods/raw foods and it seems that the Vitamix is the ideal tool. I have purchased maca, hemp seed, coconut oil, coconut water, aloe vera juice, spirulina, bee pollen, cacao and goji berries. Any suggestions on putting these together in a tasty fashion? Also, is the $50 Vitamix cookbook worth the money? Perhaps I can find a better value right here within this group. Thanks.

Elaine Radin

901.573.5454 - Cell

901.767.0686 - Home

231 Cloister Green Lane

Memphis, TN 38120

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