heart arrhythmia

August 5, 2007

, have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely."

At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo.

Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: potassiumDate: Sat, 4 Aug 2007 20:35:58 -0700 (PDT)

Becky

I have little short fast hard pounds of my heart. Is that a "palpitation"(spelling?) I was ready to blame it on the chemo. Not sure if they check my vitamin levels or not. Good question to ask this Thursday.

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August 6, 2007

Rose I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call

my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno! At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo. Anyway, I digress. You should at least have the EKG,

Holter & probably echo to at least rule out other heart problems. Ramblin' Rose Moderatorgrannylunatic@...

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

August 6, 2007

, I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT)

Rose

I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno!

At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo.

Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems.

Ramblin' Rose

Moderatorgrannylunatic (AT) yahoo (DOT) com

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now.

October 21, 2007

, My heart itself is in pretty fair shape, but it is as miswired, thanks to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker implanted in 2005 due to the severity of my heart failure. Like you, the only thing much that shows on an echo is my mitral valve. I have had a pacer since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my heart rate has been recorded below 13 beats per minute & as high as 235 beats per minute by a hospital emergency room). In 2005 I started having the severe symptoms of heart failure, I have lost as much as 8 lbs of water in 12 hrs. The heart failure is 100% better, but I still show the signs that my funky little friends (sarc) are chewing away. In a 6 mth period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach, despite my high tech pacer. None of this shows on standard testing unless you are hooked up to

an ekg while it is happening. Thank goodness my pacemaker has a memory that keeps up with irregular activity. (And yes I mean 85,000) I am 100% paced, yet I do not have clogged arteries or other things you would expect with the arrythmias I have. Please do not ignore signs that your heart may be acting up. It may take wearing a holtor monitor for a couple of days instead of 24 hrs to catch it. The pacer has been a great help to me. Connie-FLRose wrote: , I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart

arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT) Rose I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my

ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno! At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference,

cardiac sarc is often not diagnosed by EKG or echo. Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems. Ramblin' Rose Moderatorgrannylunatic (AT) yahoo (DOT) com Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now. __________________________________________________

October 22, 2007

Hi all,The other test Rose is a muga scan...it shows ejection fraction better than an echo. I'm waiting to hear when mine is scheduled since they couldn't see well enough on my last echo. It's really interesting that many folks were dx around 1994 (I was dx in May 1994) but not with cardiac (it was there...they just didn't know enough about it). So, my sarcoidosis began with heart skips...that's what took me to the ER where they did that initial chest xray that was so abnormal. But, anyone with sarcoidosis who has any type of irregular heartbeat or anything else to do with their heart must get it checked out b/c numbers show as many as 25% of us could be affected cardiac wise. I too have no chol issues: my chol is 144 and my HDL was 81...LDL was 47...triglycerides below 100.Blessings,BeckyConnie Griffis wrote: , My heart itself is in pretty fair shape, but it is as miswired, thanks to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker implanted in 2005 due to the severity of my heart failure. Like you, the only thing much that shows on an echo is my mitral valve. I have had a pacer

since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my heart rate has been recorded below 13 beats per minute & as high as 235 beats per minute by a hospital emergency room). In 2005 I started having the severe symptoms of heart failure, I have lost as much as 8 lbs of water in 12 hrs. The heart failure is 100% better, but I still show the signs that my funky little friends (sarc) are chewing away. In a 6 mth period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach, despite my high tech pacer. None of this shows on standard testing unless you are hooked up to an ekg while it is happening. Thank goodness my pacemaker has a memory that keeps up with irregular activity. (And yes I mean 85,000) I am 100% paced, yet I do not have clogged arteries or other things you would expect with the arrythmias I have. Please do not ignore signs that your heart may be acting up. It may take

wearing a holtor monitor for a couple of days instead of 24 hrs to catch it. The pacer has been a great help to me. Connie-FLRose <mamadogrose (AT) hotmail (DOT) com> wrote: , I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT) Rose I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram.

My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno! At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed

my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo. Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems. Ramblin' Rose Moderatorgrannylunatic (AT) yahoo (DOT) com Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now. __________________________________________________

October 22, 2007

Oops, Becky. I didn't read this message before I sent another asking what a muga scan is. Is it a nuclear medicine-type scan? How do they do it?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: macandtosh626@...Date: Mon, 22 Oct 2007 05:03:32 -0700Subject: Re: heart arrhythmia

Hi all,The other test Rose is a muga scan...it shows ejection fraction better than an echo. I'm waiting to hear when mine is scheduled since they couldn't see well enough on my last echo. It's really interesting that many folks were dx around 1994 (I was dx in May 1994) but not with cardiac (it was there...they just didn't know enough about it). So, my sarcoidosis began with heart skips...that's what took me to the ER where they did that initial chest xray that was so abnormal. But, anyone with sarcoidosis who has any type of irregular heartbeat or anything else to do with their heart must get it checked out b/c numbers show as many as 25% of us could be affected cardiac wise. I too have no chol issues: my chol is 144 and my HDL was 81...LDL was 47...triglycerides below 100.Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote:

,

My heart itself is in pretty fair shape, but it is as miswired, thanks to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker implanted in 2005 due to the severity of my heart failure. Like you, the only thing much that shows on an echo is my mitral valve. I have had a pacer since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my heart rate has been recorded below 13 beats per minute & as high as 235 beats per minute by a hospital emergency room). In 2005 I started having the severe symptoms of heart failure, I have lost as much as 8 lbs of water in 12 hrs. The heart failure is 100% better, but I still show the signs that my funky little friends (sarc) are chewing away. In a 6 mth period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach, despite my high tech pacer. None of this shows on standard testing unless you are hooked up to an ekg while it is happening. Thank goodness my pacemaker has a memory that keeps up with irregular activity. (And yes I mean 85,000) I am 100% paced, yet I do not have clogged arteries or other things you would expect with the arrythmias I have. Please do not ignore signs that your heart may be acting up. It may take wearing a holtor monitor for a couple of days instead of 24 hrs to catch it. The pacer has been a great help to me. Connie-FLRose <mamadogrose (AT) hotmail (DOT) com> wrote:

, I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it.

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT)

Rose

I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno!

At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo.

Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems.

Ramblin' Rose

Moderatorgrannylunatic (AT) yahoo (DOT) com

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now.

__________________________________________________

October 22, 2007

Becky,

interesting thing about many dx in 1994, I was dx in Aug 1994, cervical lymph

node, thought I had lymphoma, but said no problem it’s just Sarcoidosis

you won’t have any problems, Ha fooled themJ Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Monday, October 22, 2007

1:46 PM

To:

neurosarcoidosis

Subject: RE:

heart arrhythmia

Oops, Becky. I didn't read this message before I

sent another asking what a muga scan is. Is it a nuclear medicine-type

scan? How do they do it?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

" How

far you go in life depends on your being tender with the young, compassionate

with the aged, sympathetic with the striving, and tolerant of the weak and the

strong. Because someday in life you will have been all of these. "

~

Washington Carver

To: Neurosarcoidosis

From: macandtosh626 (AT) yahoo (DOT) com

Date: Mon, 22 Oct 2007 05:03:32 -0700

Subject: Re: heart arrhythmia

Hi all,

The other test Rose is a muga scan...it shows ejection fraction better than an

echo. I'm waiting to hear when mine is scheduled since they couldn't see well

enough on my last echo. It's really interesting that many folks were dx around

1994 (I was dx in May 1994) but not with cardiac (it was there...they just

didn't know enough about it). So, my sarcoidosis began with heart skips...that's

what took me to the ER where they did that initial chest xray that was so

abnormal. But, anyone with sarcoidosis who has any type of irregular heartbeat

or anything else to do with their heart must get it checked out b/c numbers

show as many as 25% of us could be affected cardiac wise. I too have no chol

issues: my chol is 144 and my HDL was 81...LDL was 47...triglycerides below

100.

Blessings,

Becky

Connie Griffis

<conaugusta (AT) yahoo (DOT) com> wrote:

,

My heart itself is in pretty fair shape, but it is as miswired, thanks

to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker

implanted in 2005 due to the severity of my heart failure. Like you, the

only thing much that shows on an echo is my mitral valve. I have had a

pacer since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my

heart rate has been recorded below 13 beats per minute & as high as 235

beats per minute by a hospital emergency room). In 2005 I started

having the severe symptoms of heart failure, I have lost as much as 8 lbs of

water in 12 hrs. The heart failure is 100% better, but I still show the

signs that my funky little friends (sarc) are chewing away. In a 6 mth

period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach,

despite my high tech pacer. None of this shows on standard testing unless

you are hooked up to an ekg while it is happening. Thank goodness my

pacemaker has a memory that keeps up with irregular activity. (And yes I

mean 85,000) I am 100% paced, yet I do not have clogged arteries or other

things you would expect with the arrythmias I have. Please do not ignore

signs that your heart may be acting up. It may take wearing a holtor

monitor for a couple of days instead of 24 hrs to catch it. The pacer has

been a great help to me. Connie-FL

Rose

<mamadogrose (AT) hotmail (DOT) com> wrote:

, I remember that the I.U. cardiologist mentioned a test for

cardiac sarc that was much better than an echo. I can't remember what it

was, but I've got the conference material somewhere. I'll try to find it.

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: heart

arrhythmia

Date: Sun, 5 Aug 2007 23:06:41 -0700 (PDT)

Rose

I haven't mentioned

it to my docs yet because this is a pretty much new symptom. I had the echo

thingee 2 years ago when my ankles first started swelling. Everything was ok

then. , have you reported this to your docs? You need an EKG and

probably a 24-hour Holter monitor and echocardiogram. My sarc doc has

assured me that cardiac sarc is almost always a presenting sign of sarc &

rarely occurs after you've already had other symptoms. My concern, of

course, is those words " almost " and " rarely. " I

haven't done any part of this disease in the " normal " way. My first

event was the hydro & the cvp shunt in 1997 and nobody had a clue why my

ventricle was clogged. I will mention this to my chemo doc Thursday but she's

useless as you know what on a bull! LOL If she ignores it I'll call my primary

& she'll send me where I need to go. She's a doc of internal medicine &

she does take things seriously. And of course she's another foreign doctor.

They're the only ones that take me seriously except my American gyno!

At the time I was diagnosed with sarc, in 1994, it all

started with a nifty little episode of atrial fibrillation. The workup

for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac

echo, which just showed mitral valve prolapse. I've had one or two more

echoes; same results. I'm still not convinced, since according to my reading

& a cardiologist from Ind. Univ.

Med. Center

who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by

EKG or echo.

Anyway, I digress. You should at least have the EKG,

Holter & probably echo to at least rule out other heart problems.

Ramblin' Rose

Moderator

grannylunatic (AT) yahoo (DOT) com

Building a website is a piece of cake.

Yahoo! Small Business gives you all the tools to get online.

Messenger

Café — open for fun 24/7. Hot games, cool activities served daily. Visit

now.

__________________________________________________

October 22, 2007

Marla, I was also first diagnosed in 1994, after a chest xray showed enlarged hilar nodes. I still remember the doctor saying that it was probably sarcoidosis, but I needed a biopsy to make sure it wasn't something "serious" like lymphoma. Ha!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Mon, 22 Oct 2007 20:57:43 -0700Subject: RE: heart arrhythmia

Becky, interesting thing about many dx in 1994, I was dx in Aug 1994, cervical lymph node, thought I had lymphoma, but said no problem it’s just Sarcoidosis you won’t have any problems, Ha fooled themJ Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Monday, October 22, 2007 1:46 PMTo: neurosarcoidosis Subject: RE: heart arrhythmia

Oops, Becky. I didn't read this message before I sent another asking what a muga scan is. Is it a nuclear medicine-type scan? How do they do it?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: macandtosh626 (AT) yahoo (DOT) comDate: Mon, 22 Oct 2007 05:03:32 -0700Subject: Re: heart arrhythmia

Hi all,The other test Rose is a muga scan...it shows ejection fraction better than an echo. I'm waiting to hear when mine is scheduled since they couldn't see well enough on my last echo. It's really interesting that many folks were dx around 1994 (I was dx in May 1994) but not with cardiac (it was there...they just didn't know enough about it). So, my sarcoidosis began with heart skips...that's what took me to the ER where they did that initial chest xray that was so abnormal. But, anyone with sarcoidosis who has any type of irregular heartbeat or anything else to do with their heart must get it checked out b/c numbers show as many as 25% of us could be affected cardiac wise. I too have no chol issues: my chol is 144 and my HDL was 81...LDL was 47...triglycerides below 100.Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote:

,

My heart itself is in pretty fair shape, but it is as miswired, thanks to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker implanted in 2005 due to the severity of my heart failure. Like you, the only thing much that shows on an echo is my mitral valve. I have had a pacer since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my heart rate has been recorded below 13 beats per minute & as high as 235 beats per minute by a hospital emergency room). In 2005 I started having the severe symptoms of heart failure, I have lost as much as 8 lbs of water in 12 hrs. The heart failure is 100% better, but I still show the signs that my funky little friends (sarc) are chewing away. In a 6 mth period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach, despite my high tech pacer. None of this shows on standard testing unless you are hooked up to an ekg while it is happening. Thank goodness my pacemaker has a memory that keeps up with irregular activity. (And yes I mean 85,000) I am 100% paced, yet I do not have clogged arteries or other things you would expect with the arrythmias I have. Please do not ignore signs that your heart may be acting up. It may take wearing a holtor monitor for a couple of days instead of 24 hrs to catch it. The pacer has been a great help to me. Connie-FLRose <mamadogrose (AT) hotmail (DOT) com> wrote:

, I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it.

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT)

Rose

I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and "rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno!

At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading & a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo.

Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems.

Ramblin' Rose

Moderator

grannylunatic (AT) yahoo (DOT) com

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

Messenger Café — open for fun 24/7. Hot games, cool activities served daily. Visit now.

__________________________________________________

October 23, 2007

Hi Rose,I haven't been able to get to the messages lately b/c not feeling well. A muga scan is a nuclear med test. I have mine scheduled for Nov. 16. They will inject the nuclear dye and it could take anywhere from 10 minutes to 3 hours to see what they need. I'm especially concerned that my JH echo couldn't see any of my valves (just got the actual report) and could not measure my ejection fraction (muga scan will be able to determine EF). My pain has diminished (was gettiing chest pain with heart skips). Now, my heart rate is running as low as 47 and then sometimes in the upper 90's. My PDS monitior strips showed V-tach, and many other abn rhythms over a 4 week period. Turned in my monitor yesterday and did not want to let it go but 30 days is all the cardio wrote the order for. BTW my cardio told me that he doesn't feel "comfortable" taking care of

inflammatory cardiac diseases...that would be fine but sure wish he had told me that a long time ago! Thank God for my rheum and my s Hopkins specialist. I'm on minocycline 100mg po bid (decreases inflammation), prednisone was increased on my way up to Baltimore by my rheum to 20mg in AM/10mg in PM (plus to take an extra 10mg for weird beats to make it a total of 40mg a day)...plus, began the methotrexate 10mg subq injections (do them myself) which are better absorbed than the "by mouth" med last Saturday (to continue every Saturday).The muga scan was something I hadn't heard of either until recently. I must have been in a brain fog b/c noticed on two prior posting I did that I messed up. My LDL was 81 and my HDL was 47 not the other way around...also, I have trace pericardial effusion (not infusion...yikes!).Blessings,BeckyRose wrote: Oops, Becky. I didn't read this message before I sent another asking what a muga scan is. Is it a nuclear medicine-type scan? How do they do it? Ramblin'

RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From:

macandtosh626 (AT) yahoo (DOT) comDate: Mon, 22 Oct 2007 05:03:32 -0700Subject: Re: heart arrhythmia Hi all,The other test Rose is a muga scan...it shows ejection fraction better than an echo. I'm waiting to hear when mine is scheduled since they couldn't see well enough on my last echo. It's really interesting that many folks were dx around 1994 (I was dx in May 1994) but not with cardiac (it was there...they just didn't know enough about it). So, my sarcoidosis began with heart skips...that's what took me to the ER where they did that initial chest xray that was so abnormal. But, anyone with sarcoidosis who has any type of irregular heartbeat or anything else to do with their heart must get it checked out b/c numbers show as many as 25% of us could

be affected cardiac wise. I too have no chol issues: my chol is 144 and my HDL was 81...LDL was 47...triglycerides below 100.Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: , My heart itself is in pretty fair shape, but it is as miswired, thanks to sarc; as a yugo. I had to have an InSyncIII heart failure pacemaker implanted in 2005 due to the severity of my heart failure. Like you, the only thing much that shows on an echo is my mitral valve. I have had a pacer since 1999 due to sick sinus syndrome, & brady-trachy syndrome, (my heart rate has been recorded below 13 beats per minute & as high as 235 beats per

minute by a hospital emergency room). In 2005 I started having the severe symptoms of heart failure, I have lost as much as 8 lbs of water in 12 hrs. The heart failure is 100% better, but I still show the signs that my funky little friends (sarc) are chewing away. In a 6 mth period I had 85,000 pvc's, atrial fib, atrial tach and ventricular tach, despite my high tech pacer. None of this shows on standard testing unless you are hooked up to an ekg while it is happening. Thank goodness my pacemaker has a memory that keeps up with irregular activity. (And yes I mean 85,000) I am 100% paced, yet I do not have clogged arteries or other things you would expect with the arrythmias I have. Please do not ignore signs that your heart may be acting up. It may take wearing a holtor monitor for a couple of days instead of 24 hrs to catch it. The pacer has been a great help to me.

Connie-FLRose <mamadogrose (AT) hotmail (DOT) com> wrote: , I remember that the I.U. cardiologist mentioned a test for cardiac sarc that was much better than an echo. I can't remember what it was, but I've got the conference material somewhere. I'll try to find it. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To:

Neurosarcoidosis To: Neurosarcoidosis Subject: Re: heart arrhythmiaDate: Sun, 5 Aug 2007 23:06:41 -0700 (PDT) Rose I haven't mentioned it to my docs yet because this is a pretty much new symptom. I had the echo thingee 2 years ago when my ankles first started swelling. Everything was ok then. , have you reported this to your docs? You need an EKG and probably a 24-hour Holter monitor and echocardiogram. My sarc doc has assured me that cardiac sarc is almost always a presenting sign of sarc & rarely occurs after you've already had other symptoms. My concern, of course, is those words "almost" and

"rarely." I haven't done any part of this disease in the "normal" way. My first event was the hydro & the cvp shunt in 1997 and nobody had a clue why my ventricle was clogged. I will mention this to my chemo doc Thursday but she's useless as you know what on a bull! LOL If she ignores it I'll call my primary & she'll send me where I need to go. She's a doc of internal medicine & she does take things seriously. And of course she's another foreign doctor. They're the only ones that take me seriously except my American gyno! At the time I was diagnosed with sarc, in 1994, it all started with a nifty little episode of atrial fibrillation. The workup for the arrhythmia revealed my enlarged hilar nodes. I had a cardiac echo, which just showed mitral valve prolapse. I've had one or two more echoes; same results. I'm still not convinced, since according to my reading

& a cardiologist from Ind. Univ. Med. Center who spoke at an Indy Sarc conference, cardiac sarc is often not diagnosed by EKG or echo. Anyway, I digress. You should at least have the EKG, Holter & probably echo to at least rule out other heart problems. Ramblin' Rose Moderatorgrannylunatic (AT) yahoo (DOT) com Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get

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October 27, 2007

That’s

pretty much the same, I think lymphoma would have been easier??

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Monday, October 22, 2007

10:06 PM

To:

neurosarcoidosis ; Charlotte Meeker

Subject: RE:

heart arrhythmia

Marla, I was also first diagnosed in 1994, after a

chest xray showed enlarged hilar nodes. I still remember the doctor

saying that it was probably sarcoidosis, but I needed a biopsy to make sure it

wasn't something " serious " like lymphoma. Ha!

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis

From: mebramer (AT) gmail (DOT) com

Date: Mon, 22 Oct 2007 20:57:43 -0700

Subject: RE: heart arrhythmia

Becky,

interesting thing about many dx in 1994, I was dx in Aug 1994, cervical lymph

node, thought I had lymphoma, but said no problem it’s just Sarcoidosis

you won’t have any problems, Ha fooled themJ Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose

Sent: Monday, October 22, 2007

1:46 PM

To: neurosarcoidosis

Subject: RE:

heart arrhythmia

Oops, Becky. I didn't read this message before I sent another

asking what a muga scan is. Is it a nuclear medicine-type