Hi

[Guest guest]

hi jennifer i am ok not worried about my blood pressure will see what happens tomrow . josie <jumpnjen17@...> wrote: Josie, good luck on your blood pressure. That can be scarry. Are you feeling okay? My thoughts and prayers will be with you. josie <josiedugan56@...> wrote: i went to a pharmcay this afternoon and took my blood pressure i thougt oh my now whats going on it was 151/92 thats high for me i am going to the doctor tuesday the cut on my leg isnt healed yet that could be beacuse of predisione i cant spell sorry. i hope tomrrow i get a call

from the doctor about my thyroid test i had thursday then i will let then know. josie __________________________________________________

[Guest guest]

In a message dated 10/24/2006 1:06:20 P.M. Eastern Daylight Time, brenda.morey@... writes:

Are you on meds for your bp? You should be.

Off a one time reading in a drug store machine???? I think NOT.

Anne

[Guest guest]

Kim,

I'm really, really lucky- exactly as you described, the " malaise "

feeling went away, and so did my headaches. Meds are 100% gone! I

was on so many meds for so many years, that I had gained a bit

of " puffy face " and what I call " medicine weight " . I noticed it more

in pictures taken from before and after the surgery. I was 5'11 " and

180 or close to that at time of surgery (always have been thin, but

never had bloat in my face), and was shocked to watch my weight get

lower and LOWER every time I got on the scale in the weeks following

the adrenalectomy. I'm now a shredded 155 lbs-- the same weight I

was in college!!! Although I'm working out a bit to put on a few

pounds, my face bloat is gone completely, and I look like I'm 26-28

yrs old again (I'm 36 now).

Best wishes to you.

-Kip

> >

> > Welcome to the group! I was diagnosed with Conn's after 10 years

of

> > suffering mis-diagnoses & high blood pressure treatments. Last

year,

> > I had Laparoscopic surgery to remove the 2cm tumor and the left

> > Adrenal. I am now full recovered, but everyone has different

results

> > & outcomes.

>

[Guest guest]

Rene,

I've been reading your posts for a while now----BEST of LUCK on the

25th!! Please give us detailed reports as soon as you're feeling up

to it.

Kind Regards,

-Kip

>

> Kip

>

> Glad to hear someone had the surgery and recovered.

> I waited 13 years to be correctly diagnosed with

> Conn's, my surgery is this Wednesday the 25th.

> I am hoping for a complete cure because I cannot

> tolerate any of the BP medications. I will update the

> group when I am able.

> I have found you do not get adequate care unless you

> keep fighting for it.

>

> The nephrologist who I was finally referred to and who

> became my PCP in August has left town and his patients

> are without a primary doc. My HMO has given me 30

> days from Oct 8th to find another primary. We are

> going to switch our health insurance plan to one that

> does NOT require PCP referals to specialists but that

> won't take effect till January 1. I am hoping I can

> get by with the surgeon and the endocrinologist for

> now,they are both at a University teaching hospital in

> another city.

>

> I have no faith in any of the local docs. A good

> friend, another RN,just died of non hodgkins lymphoma

> 2 weeks after diagnosis, a supposed " sudden onset "

> lymphoma. An infection set in after the 1st round of

> chemo. That killed her. She chose to stay local, at

> the hospital she worked for, rather than seek out a

> specialty center.

>

> To all members of the group still trying to get

> appropriate treatment, don't give up, do your research

> and fight for your health, you are worth it.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

I, obviously, know EXACTLY how you feel going into this right now.

Chin-up & let us all know how great you feel when it's all over!!!

Regards,

-Kip

>

> >do you have a tumor on one side? did you have venous

> >sampling

> >done? you said that you cannot tolerate the BP meds,

> >i would guess

> >that was a reason for surgery right there...and sorry

> >in advance if

> >you have given us your story previously and i have

> >just forgotten or

> >gotten you mixed up with someone else,

>

> Kim

>

> That's ok if you forgot the story, it was long and

> under " shotzie " my nickname.

>

> I have a tumor on the left adrenal and I had AVS which

> showed the excess aldosterone production coming from

> that side. I was then sent to an endocrinologist and

> from there a surgeon in a different city as no one

> here deals with the adrenals.

>

> I was given every possible med over the 13 years and

> had problems with every one of them without good

> control of my BP. The readings got higher in 2003

> and in 2004 my potassium levels started to drop but no

> one put together the symptoms to diagnosis

> hyperaldosteronism until I finally was referred to a

> nephrologist in July '06.

>

> He did a serum aldosterone/cortisol/renin test which

> showed high aldosterone levels, I then had a renal

> artery MRA which showed " beading " on the right renal

> artery, this was followed with a CT angio of the renal

> arteries again showing the " beading " meaning the

> possibility of Fibromuscular Dysplasia (FMD) and the

> CT of the adrenals and kidneys showed the adenoma on

> the left adrenal. We have a good interventional

> radiologist locally so the AVS along with a renal

> angiogram was ordered. The procedure went well, I

> declined any sedation due to my multiple drug

> allergies and sensitivities.

>

> The endocrinologist said he would have done a saline

> suppression test before the AVS but otherwise the

> results of the AVS left no doubt in anyone's mind that

> the left tumor was producing the aldosterone.

>

> I was lucky that the nephrologist had his staff call

> several endocrinologists' offices (in my HMO plan) to

> see who was familiar with treating adrenal diseases.

> Then that endocrinologist called the Mayo clinic to

> review my case. They agreed surgery was indicated.

>

> I have some reservations about going through surgery

> but I haven't been able to function well for over a

> year,I have so much muscle weakness with any exercise

> that I cannot work or enjoy anything anymore,plus my

> BP is so hard to control, even with a very strict

> diet,

> that I probably would stroke out sooner or later, so I

> am willing to take my chances.

>

> I was in very good shape prior to the hypokalemia, I

> have always eaten well, never smoked, very infrequent

> alcohol,used supplements, and I eat a non- processed,

> fresh diet most of the time due to my many allergies.

> My cholesterol numbers are ok, my inflammatory markers

> are low, My lifestyle probably delayed the onset of

> many of the hyperaldosteronism symptoms and effects

> until the level got so high my body couldn't handle it

> anymore.

>

> Thanks for your prayers, I will let the group know how

> it all turns out, good or bad

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Josie,

Are you on meds for your bp? You should be. and yes the pred makes you heal slower. I hope your doc can help give you some answers. I am praying for you. Let us know about the thyroid, I am hypothyroid too and didn't know it but I am on synthroid now and it's better.

much love,

[Guest guest]

In a message dated 10/24/2006 6:40:02 P.M. Eastern Daylight Time, josiedugan56@... writes:

if your talking to josie i know what i am doing ok

Are you following this thread?Anne

[Guest guest]

-Kip

Thanks for the words of encouragement, it will be worth it just to

get rid of that " puffy face " you talk about. For the past few years

no matter what I weighed I had that " doughboy " look.

I am also sick to death of taking the 80meq of potassium a day, my

intestines sometimes don't like it either.

I will definitely post when I am able

-- In hyperaldosteronism , " kip_pm " <kip_pm@...> wrote:

>

> ,

>

> I, obviously, know EXACTLY how you feel going into this right now.

> Chin-up & let us all know how great you feel when it's all over!!!

>

> Regards,

>

> -Kip

>

>>

[Guest guest]

brenda my b- p is better yes i am on meds doctor told me my cut dosent look good now i am on a antibotic and a cream for the cut if its not better by next tuesday i have to go to another doctor. the antibotic for bacteria is having a reverse reaction now i am being watched my thyroid i dont know yet josie M <brenda.morey@...> wrote: Hi Josie, Are you on meds for your bp? You should be. and yes the pred makes you heal slower. I hope your doc can help give you some answers. I am praying for you. Let us know about the thyroid, I am hypothyroid too and didn't know it but I am on synthroid now and it's better. much love,

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

[Guest guest]

I agree with Anne. One reading even at a doctor's office would only need follow up to see if it was a one time thing. Store monitors should not be relied on but can give an indication. If several readings at the store were bad then proper follow up is needed. Not long ago while waiting for a prescription I checked mine. It was something like 70/20. The Pharmacist was there so I asked if he knew if the machine was having a problem. He said he didn't think so. I retested and it was only slightly higher than the first. Clearly the machine was not correct. Even if a machine is in good working order, even at the doctor's office, individuals sometimes have quirks at the moment that causes wrong readings.

Be aware of what could be and get checked when you can.

Betty

Re: hi

In a message dated 10/24/2006 1:06:20 P.M. Eastern Daylight Time, brenda.morey@... writes:

Are you on meds for your bp? You should be.

Off a one time reading in a drug store machine???? I think NOT.

Anne

[Guest guest]

In a message dated 10/24/2006 9:52:48 P.M. Eastern Daylight Time, josiedugan56@... writes:

yes i am trying to why anne

Because no one ever said you didn't know what you were doing. Anne

[Guest guest]

yes i am trying to why anneAStep17427@... wrote: In a message dated 10/24/2006 6:40:02 P.M. Eastern Daylight Time, josiedugan56@... writes: if your talking to josie i know what i am doing ok Are you following this thread?Anne

Get your own web address for just $1.99/1st yr. We'll help. Small Business.

[Guest guest]

In a message dated 10/24/06 9:23:31 PM, shotzie@... writes:

I am also sick to death of taking the 80meq of potassium a day, my

intestines sometimes don't like it either.

I will definitely post when I am able

Good reason to go to low sodium V-8. 2-3 cans will almost get you the 80 mEq + and tastes better-if you like V-8.

Also gets you some of your veggies for the day.

May your pressure be low!

Clarence E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

Unfortunately Rene's story seems to be the norm-at least for those who make it to our site. Hopefully there are many more who do not progress to the advanced stage of the disease before they are recognized and do not get to our web site. Rene's story is classic as one who is going thru the various stages of evolution of PA as noted in my paper.

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

Welcome rob! This is truly an international list. I'm from Melbourne

Australia. I have SMA 1/2. Feel free to tell us all a bit about you.

Hi

Hi,

I just joined your group after talking with . I am the person

she met in DC and I look foward to know all of you better,

Rob

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

oogroups.com

List manager: (Sexy Mature Artist) Email: Esma1999@...

[Guest guest]

Welcome, Rob!!

Rob <rprittscpa@...> wrote: Hi,

I just joined your group after talking with . I am the person

she met in DC and I look foward to know all of you better,

Rob

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

Check out the New - Fire up a more powerful email and get things

done faster.

[Guest guest]

Welcome Rob!

Rob <rprittscpa@...> wrote:

Hi,

I just joined your group after talking with . I am the person

she met in DC and I look foward to know all of you better,

Rob

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

oogroups.com

List manager: (Sexy Mature Artist) Email: Esma1999@...

[Guest guest]

Welcome, Rob! I wish you and lots of happiness!

>

> Hi,

>

> I just joined your group after talking with . I am the person

> she met in DC and I look foward to know all of you better,

>

> Rob

>

[Guest guest]

Welcome Rob. :-)

Lori

>

>

> >

> > Hi,

> >

> > I just joined your group after talking with . I am the person

> > she met in DC and I look foward to know all of you better,

> >

> > Rob

> >

>

>

[Guest guest]

Hi everyone,

I am 33 and I live in Aurora Il 40 miles west of Chicago. I am a cpa

and went to the Unvirsity of Illinois in Urbana. A few weeks ago I

met this amazing women named , in DC, she caught my eye the

second I saw her.

I want to some speaking and publishing on disabled issues. I would

love to hear more about all of you and get to know you all more.

Rob

[Guest guest]

Welcome to the list, Rob!

Camilla

>

> Hi everyone,

>

> I am 33 and I live in Aurora Il 40 miles west of Chicago. I am a cpa

> and went to the Unvirsity of Illinois in Urbana. A few weeks ago I

> met this amazing women named , in DC, she caught my eye the

> second I saw her.

>

> I want to some speaking and publishing on disabled issues. I would

> love to hear more about all of you and get to know you all more.

>

> Rob

>

[Guest guest]

Thanks for the info Mel

Dick

At 08:31 PM 11/1/2006, you wrote:

Just wanted to let yall know

that mom is doing ok but her puter is dead. She'll be back on line

in a few days. I hope this message finds everyone well and in good

spirits.

Love

Mel

[Guest guest]

Hi !

I'm hanging in there. Week 5 of treatment with nothing major happening. Occassional nausea which the Doctor suggested I take Emetrol to control. Seems to work OK. I've been running an occasional fever but nothing that doesn't go away with some Tylenol. Biggest problem I'm having is the Tx doesn't seem to know when to hit me with the major side effects. First couple of weeks they hit the night of the shot (I take my shots on Friday nights), third week they hit Saturday night, fourth week Sat.-Sun. and now with this last shot nothing hit until last night and today. I spoke with the Roche folks and they said it should even out soon. I hope so as it causes havoc with planning activities. I have a handyman job to do tomorrow that I had to reschedule.

That's about it for me today.

Allan with 2 L's party on

Hi

I just wanted to say hi to eveyone. Suzie, I hope by the time you read this you are not so fusterated. Everything will work out. I have kind of been in the dumps latley myself. But anyways! I got internet at home finally. So if anyone ever see's me on messenger dont be a stranger. nwatkins_79I got it hooked up to see if it will help with my depression. You know give me something to do.I havent seen any post from Allan I hope that he is doing okay. How are you d and deb?I know that doesnt cover everyone but i am still working on getting to remember everyone. So how is everyone?

[Guest guest]

Allan, That is so good to hear. You have such a possitive attitude towards all of this.I am a big baby if I am nauseated or have a fever LOL. I wish I was just like you. How come men are so much stronger when it comes to tolerating pain or sickness??? LOL god is never fair. What is the Roche team? Keep us posted. And if you have been excuse me Ive been real wierd latley. Take Care, Allan W Anger Jr <allananger@...> wrote: Hi ! I'm hanging in there. Week 5 of treatment with nothing major happening. Occassional nausea which the Doctor suggested I take Emetrol to control. Seems to work OK. I've been running an occasional fever but nothing that doesn't go away with some Tylenol. Biggest problem I'm having is the Tx doesn't seem to know when to hit me with the major side effects. First couple of weeks they hit the night of the shot (I take my shots on Friday nights), third week they hit Saturday night, fourth week Sat.-Sun. and now with this last shot nothing hit until last night and today. I spoke with the Roche folks and they said it should even out soon. I hope so as it causes havoc with planning activities. I have a handyman job to do tomorrow that I had to reschedule. That's about it for me today. Allan with 2 L's party on Hi I just wanted to say hi to eveyone. Suzie, I hope by the time you read this you are not so fusterated. Everything will work out. I have kind of been in the dumps latley myself. But anyways! I got internet at home finally. So if anyone ever see's me on messenger dont be a stranger. nwatkins_79I got it hooked up to see if it will help with my depression. You know give me something to do.I havent seen any post from Allan I hope that he is doing okay. How are you d and deb?I know that doesnt cover everyone but i am still working on getting to remember everyone. So how is everyone?

Sponsored Link

Try Netflix today! With plans starting at only $5.99 a month what are you waiting for?

[Guest guest]

, how can you say that " Men are so much stronger when it comes to tolerating pain or sickness," Bull - If men had to have babies instead of women there'd be only 1 kid per family. They are such wimps when it comes to pain or sickness, big babies they are. My Dad gets a sniffle & he expects my Mum to wait on him hand & foot, always has, always will - they're both 76 now (married 57 years now I would've strangled him before the first year was up)

I'm just ticked with my doctors but then I always am - it seems I know more about HCV than they do & they keep playing pass the buck with my treatment & prognosis. I just get a bit steamed is all & I always feel better after I've vented. That's one of the reasons I love this group, you listen even when I'm just bitching.

Take Care,

SuZie

Next time I'm coming back as a cat

[Hepatitis CSupportG roupForDummies] Hi

I just wanted to say hi to eveyone. Suzie, I hope by the time you read this you are not so fusterated. Everything will work out. I have kind of been in the dumps latley myself. But anyways! I got internet at home finally. So if anyone ever see's me on messenger dont be a stranger. nwatkins_79I got it hooked up to see if it will help with my depression. You know give me something to do.I havent seen any post from Allan I hope that he is doing okay. How are you d and deb?I know that doesnt cover everyone but i am still working on getting to remember everyone. So how is everyone?

Sponsored LinkTry Netflix today! With plans starting at only $5.99 a month what are you waiting for?