Re: PA Survey Questions

March 26, 2009

Some added questions

Do you eat licorice or use licorice flavored foods, candy or drinks or OTC

products? If so these may be the cause of your HTN and low K.

Has a Dr ever recommended the DASH diet as part of your therapy?

When your low K was first discovered what was the reason you were told it was

low?

If you had high blood pressure before you were pregnant did it get better when

you were pregnant?

Do you ever have a metallic taste in your mouth? (indicates high K in saliva

induced by high aldo).

Have you ever gotten hand and finger cramps when using your hands such a with a

screwdriver or holding cards or playing the piano or typing? yes no please

describe.

Do you take your BP at home?

If not why not?

There are many genetic causes of high blood pressure that run strongly in

families.

Please get as much information as you can about your family history and

construct your family high blood pressure pedigree.

As far back as you can go list the age and cause of death of everyone in your

family. At the next family reunion ask all there to help with this as it will

save many lives in some families. Ask if anyone has had a Hx of low K or has

had to take K pills.

Have you ever smoked cigarettes regularly? If so this increases your risk of

having high blood pressure caused by a renal artery stenosis-one of the curable

causes of high blood pressure. An easy way to make this Dx is to ask your Dr to

listen carefully in the upper part of your stomach for a whooshing should like a

blood pressure sound in the center about your belly button or to the sides under

the rib cage.

If your renin is low you do not have this kind of high blood pressure.

If you developed high blood pressure suddenly this is one of the causes of high

blood pressure your Dr must look for.

You can go to NIH (I dont recall site) and do this using their family tree

program.

Many drugs do not work to lower BP in PA.

What was the effect of ACEs on your BP?

What was the effect of ARBs on your BP?

What has been the effect of BB on your BP?

What has been the effect of CCBs on your BP?

What has been the effect of MCBs on your BP?

Has an eye Dr ever told you had blood pressure damage in your eyes when he

looked inside?

Be sure your Dr at the first visit takes your BP (according to AHA guidelines)

in both arms. One curable cause of high blood pressure , especially if you are

young, is coarctation of the aorta and congenital heart defect in which BP in

the left arm and in the legs, is much lower the BP in the right arm. In another

version of this problem BP will be high in the arms but very low in the legs.

This is the reason everyone with high blood pressure should have a BP taken in

the legs or at least the Dr. feels for a radial-femoral pulse lag caused by the

narrowing of the aorta above the femoral arteries.

Clarence E. Grim, BS, MS, MD

On Thursday, March 26, 2009, at 05:31PM, " a Hall " <shahall@...>

wrote:

>

>Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked

them when they were searching for a diagnosis?

>

>a

>

March 26, 2009

>

> Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked

them when they were searching for a diagnosis?

>

> a

>

Hope these questions may help

Do you have fatigue

Do you have muscle weakness and wasting

Do you have muscle pain, twitching, prolonged spasm, cramping

Do you have strange sensations on your skin

Do you have tingling through your body

Do you have sensations of ants crawling on your skin

Do you have chest pain, that doesnt show anything on ECG

Do you have palpitations esp at night when lying down, on left side

Do you have dizzy episodes

Do you have memory loss, confusion, brief episodes of disorientation

Do you have constant episodes of sweating - full body, partial body, only one

body part

Do you have heat in one area of body, eg left arm, that builds up, then becomes

itchy and a rash or lumps develop, then resolves itself

Do you have tremors and shaking

Do you have numbness in areas of body that change location

March 26, 2009

Questions I would like to ask are

What are the key symptoms that you felt?

what speciality diagnozed your condition i.e nephrologist, internist

How many specialists did you see before confirmation of diagnosis

for me it is not questions that I wished the physcian has asked but more getting

some information/resource at the start of the long road.

From: a Hall <shahall@...>

Subject: PA Survey Questions

hyperaldosteronism

Received: Thursday, March 26, 2009, 6:31 PM

Again, I'd like to ask the group to contribute questions to the PA survey that's

being developed. Nobody here has questions they're curious about regarding PA?

Nobody has questions that they wish their physician had asked them when they

were searching for a diagnosis?

a

__________________________________________________________________

Connect with friends from any web browser - no download required. Try the new

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http://ca.messenger../webmessengerpromo.php

March 26, 2009

Hi a

I'm very pleased you and others are taking these initiatives.

Congratulations to all concerned!

General questions

1. Can a person have low potassium levels sufficient to cause ill

effects, even when the blood analysis indicates " within normal range " ,

and the blood has been taken according to the proper guidelines?

2. Are there any known links between PA and bowel polyposis?

3. Are there any known links between PA and spinal pain?

4.Are there any known links between PA and brain functioning?

5. Why is it that in some countries, doctors are wary of prescribing

more than 50mg per day of spiro?

Survey questions

1. Where you may have BP under control and potassium normalised through

the use of spiro, what symptoms persist?

2. Have you had bowel polyps?

3. Do you have weakness in the back and legs such that unsupported

walking is difficult?

4. Do you suffer from mental confusion/ foggy brain?

5. What dosage of spiro has proved most beneficial to you?

6. Have you ever been able to say, " At last, I'm feeling better " ?

Carol

a Hall wrote:

>

> Again, I'd like to ask the group to contribute questions to the PA

> survey that's being developed. Nobody here has questions they're

> curious about regarding PA? Nobody has questions that they wish their

> physician had asked them when they were searching for a diagnosis?

>

> a

>

March 26, 2009

There are a number of ways that drawing and handling blood that can

falsely increase true low K to normal or even high K and these are

detailed in one of our files. Read these and take to your health care

team.

What Sx are u talking about?

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 26, 2009, at 8:33 PM, Carol Christie <carolch@...> wrote:

> Hi a

> I'm very pleased you and others are taking these initiatives.

> Congratulations to all concerned!

>

> General questions

> 1. Can a person have low potassium levels sufficient to cause ill

> effects, even when the blood analysis indicates " within normal range " ,

> and the blood has been taken according to the proper guidelines?

> 2. Are there any known links between PA and bowel polyposis?

> 3. Are there any known links between PA and spinal pain?

> 4.Are there any known links between PA and brain functioning?

> 5. Why is it that in some countries, doctors are wary of prescribing

> more than 50mg per day of spiro?

>

> Survey questions

> 1. Where you may have BP under control and potassium normalised

> through

> the use of spiro, what symptoms persist?

> 2. Have you had bowel polyps?

> 3. Do you have weakness in the back and legs such that unsupported

> walking is difficult?

> 4. Do you suffer from mental confusion/ foggy brain?

> 5. What dosage of spiro has proved most beneficial to you?

> 6. Have you ever been able to say, " At last, I'm feeling better " ?

>

> Carol

>

> a Hall wrote:

> >

> > Again, I'd like to ask the group to contribute questions to the PA

> > survey that's being developed. Nobody here has questions they're

> > curious about regarding PA? Nobody has questions that they wish

> their

> > physician had asked them when they were searching for a diagnosis?

> >

> > a

> >

>

March 26, 2009

Some Dr don't

Recall the old days (not born yet) when we would go to 400 my

A

Day

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 26, 2009, at 8:33 PM, Carol Christie <carolch@...> wrote:

> Hi a

> I'm very pleased you and others are taking these initiatives.

> Congratulations to all concerned!

>

> General questions

> 1. Can a person have low potassium levels sufficient to cause ill

> effects, even when the blood analysis indicates " within normal range " ,

> and the blood has been taken according to the proper guidelines?

> 2. Are there any known links between PA and bowel polyposis?

> 3. Are there any known links between PA and spinal pain?

> 4.Are there any known links between PA and brain functioning?

> 5. Why is it that in some countries, doctors are wary of prescribing

> more than 50mg per day of spiro?

>

> Survey questions

> 1. Where you may have BP under control and potassium normalised

> through

> the use of spiro, what symptoms persist?

> 2. Have you had bowel polyps?

> 3. Do you have weakness in the back and legs such that unsupported

> walking is difficult?

> 4. Do you suffer from mental confusion/ foggy brain?

> 5. What dosage of spiro has proved most beneficial to you?

> 6. Have you ever been able to say, " At last, I'm feeling better " ?

>

> Carol

>

> a Hall wrote:

> >

> > Again, I'd like to ask the group to contribute questions to the PA

> > survey that's being developed. Nobody here has questions they're

> > curious about regarding PA? Nobody has questions that they wish

> their

> > physician had asked them when they were searching for a diagnosis?

> >

> > a

> >

>

March 26, 2009

Did u see a specialist in hypertension? ie board certified by the

American Soc of HTN?

You can find a list of such aT their web

Site.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 26, 2009, at 8:20 PM, Sue james <semajsue1@...> wrote:

>

> Questions I would like to ask are

>

> What are the key symptoms that you felt?

> what speciality diagnozed your condition i.e nephrologist, internist

> How many specialists did you see before confirmation of diagnosis

>

> for me it is not questions that I wished the physcian has asked but

> more getting some information/resource at the start of the long road.

>

> From: a Hall <shahall@...>

> Subject: PA Survey Questions

> hyperaldosteronism

> Received: Thursday, March 26, 2009, 6:31 PM

>

> Again, I'd like to ask the group to contribute questions to the PA

> survey that's being developed. Nobody here has questions they're

> curious about regarding PA? Nobody has questions that they wish

> their physician had asked them when they were searching for a

> diagnosis?

>

> a

>

> __________________________________________________________

> Connect with friends from any web browser - no download required.

> Try the new Canada Messenger for the Web BETA at http://ca.messenger

> ../webmessengerpromo.php

>

March 26, 2009

Might change first few words to have u ever had....

I think it would be useful to have a timeline from first high BP as

zero time and then place each symptom or sign such as low K on the

time line visits to Er etc

Might also be useful to add $ spent by u or insurance till Dx

Was

Made.

Tiped sad Send form mi

iPhone ;-)

May your pressure be low!

CE Grim MD

Specializing in Difficult

Hypertension

On Mar 26, 2009, at 7:43 PM, hdrewe <hdrewe@...> wrote:

>

> >

> > Again, I'd like to ask the group to contribute questions to the PA

> survey that's being developed. Nobody here has questions they're

> curious about regarding PA? Nobody has questions that they wish

> their physician had asked them when they were searching for a

> diagnosis?

> >

> > a

> >

> Hope these questions may help

>

> Do you have fatigue

> Do you have muscle weakness and wasting

> Do you have muscle pain, twitching, prolonged spasm, cramping

> Do you have strange sensations on your skin

> Do you have tingling through your body

> Do you have sensations of ants crawling on your skin

> Do you have chest pain, that doesnt show anything on ECG

> Do you have palpitations esp at night when lying down, on left side

> Do you have dizzy episodes

> Do you have memory loss, confusion, brief episodes of disorientation

> Do you have constant episodes of sweating - full body, partial body,

> only one body part

> Do you have heat in one area of body, eg left arm, that builds up,

> then becomes itchy and a rash or lumps develop, then resolves itself

> Do you have tremors and shaking

> Do you have numbness in areas of body that change location

>

March 27, 2009

Hello a!

You have already got many good questions.

I wish my primary doctor, or any MD I have seen the last 20 years, had asked

me about peeing habits and thirst.

I am always thirsthy and have to pee every hour of the day. These are classical

syptoms of PA, but I have had them for so long it feels normal to me.

For the survey I am curious about other symtoms that can point to PA.

What about a list off all the symptoms and other deseases the group have

experienced, to be answered by yes, no, or dont know, to see some statistics off

our problems?

Ex: Low K; Low vitamin D; Other hormones tare not normal, like insulin or

testosterone; fibroids; itching, bruising, sweating, hot flashes and all we can

think off?

Henriette

________________________________

From: a Hall <shahall@...>

hyperaldosteronism

Sent: Thursday, March 26, 2009 11:31:17 PM

Subject: PA Survey Questions

Again, I'd like to ask the group to contribute questions to the PA survey that's

being developed. Nobody here has questions they're curious about regarding PA?

Nobody has questions that they wish their physician had asked them when they

were searching for a diagnosis?

a

March 27, 2009

These are all excellent questions, but they're based on the assumption that the

doctor would know about PA and be open to the possibility that the patient could

have it. And then, if the patient has never heard about PA, and the doctor who

is asking the questions doesn't know diddly about PA, then the answers would

mean nothing. You see, it's like the blind leading the blind.

For example, I had never heard of PA, didn't even know where my adrenal gland

was or what it did. For six years, I was treated by the same doctor for HBP. I

told her about the low K, but she ignored it. She kept wanting me to go on a

diuretic and I kept telling her that I peed enough as it is. She never asked the

followup question, " How many times a day or night do you pee? " And I put down

the excessive urination as a perimenopausal symptom. I didn't realize it, but I

was sending her huge signals about what was wrong with me, which she didn't know

what to do with. So, I guess my question is, how do you envision this survey

being put to use? Will it be circulated to primary care doctors? Sorry if I

missed the explanation on the purpose of this survey. I think it's a great idea

to gather all of this information together, but not sure what the plan is? What

are we going to do with it?

>

> Again, I'd like to ask the group to contribute questions to the PA survey

that's being developed. Nobody here has questions they're curious about

regarding PA? Nobody has questions that they wish their physician had asked

them when they were searching for a diagnosis?

>

> a

>

March 27, 2009

,

I agree with you 100%. I emailed Dr. Grim earlier and suggested that we

split this into two different projects, the first being a survey for those of us

already diagnosed with PA, with the resulting data to be used in a scientific

paper about PA. The second document would be a joint effort between everyone

here. We could formulate a questionaire in the " files " section of the group

that would list questions that in retrospect we wished we'd asked our doctors

and the questions we think our doctors should have asked us on the road to

diagnosis. It could save new members who think they might have PA a lot of

time, grief and money.

a

From: em5704 <em5704@...>

Subject: Re: PA Survey Questions

hyperaldosteronism

Date: Friday, March 27, 2009, 8:00 PM