Rose, about this heart thing

[Guest guest]

Rose,

I keep hearing about ppl getting an echo cardiogram. I have had one, a

long time ago, but do we need a yearly one like our mamo? Was just

wonddering, and if we do need one, what is the medical reason? I am

sure that I will have to give my doc a reason. Thanks for the ear.

Lynne

[Guest guest]

Lynne, cardiac sarc can be difficult to diagnose. At one of the Indy Sarc Conferences, a cardiologist from IU said that EKGs & echos were not very good at detecting sarc. There's a special test that she recommends (I'll have to look it up in my binder from that conference), but not as a screening tool. If you have any arrhythmias, you need a workup. Unfortunately, some people have no symptoms until a cardiac arrest. I read somewhere that a pretty high percentage of people with sarc, I'm thinking around 50%, actual have some granulomas in the heart, but most never have any symptoms or actual heart problems.

I'll look for that info for you; it will probably be next week.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Rose, about this heart thingDate: Thu, 12 Apr 2007 12:45:01 -0000

Rose, I keep hearing about ppl getting an echo cardiogram. I have had one, a long time ago, but do we need a yearly one like our mamo? Was just wonddering, and if we do need one, what is the medical reason? I am sure that I will have to give my doc a reason. Thanks for the ear.Lynne

Interest Rates Fall Again! $430,000 Mortgage for $1,399/mo - Calculate new payment

[Guest guest]

Rose, Thank you so much for your time,,,AGAIN, lol. Lots of Love LynneRose wrote: Lynne, cardiac sarc can be difficult to diagnose. At one of the Indy Sarc Conferences, a cardiologist from IU said that EKGs & echos were not very good at

detecting sarc. There's a special test that she recommends (I'll have to look it up in my binder from that conference), but not as a screening tool. If you have any arrhythmias, you need a workup. Unfortunately, some people have no symptoms until a cardiac arrest. I read somewhere that a pretty high percentage of people with sarc, I'm thinking around 50%, actual have some granulomas in the heart, but most never have any symptoms or actual heart problems. I'll look for that info for you; it will probably be next week. Ramblin' Rose Moderator From: "children8_2000" <children8_2000 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Rose, about this heart thingDate: Thu, 12 Apr 2007 12:45:01 -0000 Rose, I keep hearing about ppl getting an echo cardiogram. I have had one, a long time ago, but do we need a yearly one like our mamo? Was just wonddering, and if we do need one, what is the medical reason? I am sure that I will have to give my doc a reason. Thanks for the ear.Lynne Interest Rates Fall Again! $430,000

Mortgage for $1,399/mo - Calculate new payment

To My New Family

Love Lynne

Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

[Guest guest]

Hello,

I just thought i would share this experience with you as i have cardiac

sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did

show that the results were a lit bit abnormal. Now as far as i am

concerned my specialist should have kept a closer eye on it and he

didn't. As of September last year i have an " ICD " which stands for

Implantable Cardioverter Device. This now has to regualte my heart as

i have scarring in my heart and have ended up with Ventricular

Tachycardia where the heart can start beating too fast. I was having

alot of palpatations at the time and believe the damage had probably

already been done. I also have to take 2 different types of

medications every day for the rest of my life even if the sarcoid

disappears. I am only 33. All i want to tell you is to be very

careful. If you think you are having ANY issues with your heart get it

checked out straight away. There is no harm in being too careful.

Rose is right - it is difficult to diagnose. Let me know if you have

anymore questions.

L.

[Guest guest]

Hi , Rose, and all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead

on the floor the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid issues. Blessings,Becky L wrote: Hello, I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the

results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device. This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done. I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away. There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Becky, thanks for contributing more information about cardiac sarc. I'm still looking for the info I promised Lynne. I know that the granulomas like to congregate in the walls between the chambers of the heart. The conduction system runs through there, giving the sarc monster an opportunity. An echo will often miss those granulomas, unless the shape of a wall or chamber is altered. I know someone who had no idea she had sarcoidosis until she developed an arrhythmia. Her doctor sent her to the E.R. where she had a cardiac arrest & was clinically dead. After resuscitating her, tests showed that sarcoidosis was the culprit. Thank goodness she went straight to the hospital. It's scary, but we are probably a lot more likely to die driving on the highway or crossing the street. So I try to keep it in perspective & concenrate on the things I have some control over.

But you are absolutely correct that we need to push for testing if there is any suspicion of cardiac involvement.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 09:46:04 -0700 (PDT)

Hi , Rose, and all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead on the floor the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid issues. Blessings,Becky L <jca_susan (AT) yahoo (DOT) com.au> wrote:

Hello,I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device. This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done. I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away. There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

[Guest guest]

Rose,When you know you have cardiac sarcoid it is hard to not think about the possible consequences. I do ok until my ticker starts acting up and then it's impossible to not think about it. Since my AICD was put in, I do have a certain peace of mind...like an ER in my chest. Even if there are no granulomas there can be inflammation r/t the sarcoid and that can lead to serious conduction problems. The echo was helpful to determine my ejection fraction. There are cardiac MRI's that can be done (not with an AICD though) that can be helpful with dx cardiac sarcoid. There's also a CT (64 slice) that can look at the heart. I am seen at the s Hopkins Sarcoidosis Clinic in Baltimore, MD. Blessings,BeckyRose wrote: Becky, thanks for contributing more information about cardiac sarc. I'm still looking for the info I promised Lynne. I know that the granulomas like to congregate in the walls between the chambers of the heart. The conduction system runs through there, giving the sarc monster an opportunity. An echo will often miss those granulomas, unless the shape of a wall or chamber is altered. I know someone who had no idea she had sarcoidosis until she developed an arrhythmia. Her doctor sent her to the E.R. where she had a cardiac arrest & was clinically dead. After resuscitating her, tests showed that sarcoidosis was the culprit. Thank goodness she went straight to

the hospital. It's scary, but we are probably a lot more likely to die driving on the highway or crossing the street. So I try to keep it in perspective & concenrate on the things I have some control over. But you are absolutely correct that we need to push for testing if there is any suspicion of cardiac involvement. Ramblin' Rose Moderator From: Mac Tosh

<macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 09:46:04 -0700 (PDT) Hi , Rose, and all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin

decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead on the floor the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid issues. Blessings,Becky L <jca_susan (AT) yahoo (DOT) com.au> wrote: Hello,I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device. This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done. I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away.

There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. The average US Credit Score is 675. The cost to see yours: $0 by Experian.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Hi Becky,

Yes you are right - it is difficult to not worry about it but i

refuse to let it take over my life. I think enough of the sarcoid

has alread done that. Do you mind if i ask what your ejection

fraction was? I am also on 2 different types of heart tablets so

make the heart relax a little and easier to beat. I am assuming you

must be on some too? Anyway sorry for being nosey!

Take care

> Hello,

>

> I just thought i would share this experience with you as i have

cardiac

> sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but

did

> show that the results were a lit bit abnormal. Now as far as i am

> concerned my specialist should have kept a closer eye on it and he

> didn't. As of September last year i have an " ICD " which stands for

> Implantable Cardioverter Device. This now has to regualte my heart

as

> i have scarring in my heart and have ended up with Ventricular

> Tachycardia where the heart can start beating too fast. I was

having

> alot of palpatations at the time and believe the damage had

probably

> already been done. I also have to take 2 different types of

> medications every day for the rest of my life even if the sarcoid

> disappears. I am only 33. All i want to tell you is to be very

> careful. If you think you are having ANY issues with your heart

get it

> checked out straight away. There is no harm in being too careful.

> Rose is right - it is difficult to diagnose. Let me know if you

have

> anymore questions.

>

> L.

>

>

>

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check out new cars at Yahoo! Autos.

>

>

>

>

>

>

>

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

> The average US Credit Score is 675. The cost to see yours: $0 by

Experian.

>

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Yahoo! Autos.

>

[Guest guest]

Becky, I didn't mean that patients with cardiac sarc should worry more about being hit by a car! I meant that even though all of us with sarc have a risk of cardiac sarcoid, we're probably more likely to die in an accident, etc. Sorry if it sounded like I was blowing off a very serious condition.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 13:17:03 -0700 (PDT)

Rose,When you know you have cardiac sarcoid it is hard to not think about the possible consequences. I do ok until my ticker starts acting up and then it's impossible to not think about it. Since my AICD was put in, I do have a certain peace of mind...like an ER in my chest. Even if there are no granulomas there can be inflammation r/t the sarcoid and that can lead to serious conduction problems. The echo was helpful to determine my ejection fraction. There are cardiac MRI's that can be done (not with an AICD though) that can be helpful with dx cardiac sarcoid. There's also a CT (64 slice) that can look at the heart. I am seen at the s Hopkins Sarcoidosis Clinic in Baltimore, MD. Blessings,BeckyRose <mamadogrose (AT) hotmail (DOT) com> wrote:

Becky, thanks for contributing more information about cardiac sarc. I'm still looking for the info I promised Lynne. I know that the granulomas like to congregate in the walls between the chambers of the heart. The conduction system runs through there, giving the sarc monster an opportunity. An echo will often miss those granulomas, unless the shape of a wall or chamber is altered. I know someone who had no idea she had sarcoidosis until she developed an arrhythmia. Her doctor sent her to the E.R. where she had a cardiac arrest & was clinically dead. After resuscitating her, tests showed that sarcoidosis was the culprit. Thank goodness she went straight to the hospital. It's scary, but we are probably a lot more likely to die driving on the highway or crossing the street. So I try to keep it in perspective & concenrate on the things I have some control over.

But you are absolutely correct that we need to push for testing if there is any suspicion of cardiac involvement.

Ramblin' Rose

Moderator

From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 09:46:04 -0700 (PDT)

Hi , Rose, and all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead on the floor the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid issues. Blessings,Becky L <jca_susan (AT) yahoo (DOT) com.au> wrote:

Hello,I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device. This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done. I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away. There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

MSN is giving away a trip to Vegas to see Elton .  Enter to win today.

[Guest guest]

Hi Rose,Oh my...I didn't think that you meant that at all. You are an encouragement with everything that you write! I was just expressing my own fears.Blessings,BeckyRose wrote: Becky, I didn't mean that patients with cardiac sarc should worry more about being hit by a car! I meant that even though all of us with sarc have a risk of cardiac sarcoid, we're probably more likely to die in an accident, etc. Sorry if it sounded like I was blowing off a

very serious condition. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007

13:17:03 -0700 (PDT) Rose,When you know you have cardiac sarcoid it is hard to not think about the possible consequences. I do ok until my ticker starts acting up and then it's impossible to not think about it. Since my AICD was put in, I do have a certain peace of mind...like an ER in my chest. Even if there are no granulomas there can be inflammation r/t the sarcoid and that can lead to serious conduction problems. The echo was helpful to determine my ejection fraction. There are cardiac MRI's that can be done (not with an AICD though) that can be helpful with dx cardiac sarcoid. There's also a CT (64 slice) that can look at the heart. I am seen at the s Hopkins Sarcoidosis Clinic in Baltimore, MD. Blessings,BeckyRose <mamadogrose (AT) hotmail (DOT) com> wrote:

Becky, thanks for contributing more information about cardiac sarc. I'm still looking for the info I promised Lynne. I know that the granulomas like to congregate in the walls between the chambers of the heart. The conduction system runs through there, giving the sarc monster an opportunity. An echo will often miss those granulomas, unless the shape of a wall or chamber is altered. I know someone who had no idea she had sarcoidosis until she developed an arrhythmia. Her doctor sent her to the E.R. where she had a cardiac arrest & was clinically dead. After resuscitating her, tests showed that sarcoidosis was the culprit. Thank goodness she went straight to the hospital. It's scary, but we are probably a lot more likely to die driving on the highway or

crossing the street. So I try to keep it in perspective & concenrate on the things I have some control over. But you are absolutely correct that we need to push for testing if there is any suspicion of cardiac involvement. Ramblin' Rose Moderator

From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 09:46:04 -0700 (PDT) Hi , Rose, and all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed

inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead on the floor the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid

issues. Blessings,Becky L <jca_susan (AT) yahoo (DOT) com.au> wrote: Hello,I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device. This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done.

I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away. There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. The average US Credit Score is 675. The cost to see yours: $0 by Experian. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. MSN is giving away a trip to Vegas to see Elton . Enter to win today.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

THATS OUR ROSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Mac Tosh wrote: Hi Rose,Oh my...I didn't think that you meant that at all. You are an encouragement with everything that you write! I was just expressing my own fears.Blessings,BeckyRose <mamadogrose (AT) hotmail (DOT) com> wrote: Becky, I didn't mean that patients with cardiac sarc should worry more about being hit by a car! I meant that even though all of us with sarc have a risk of cardiac sarcoid, we're probably more likely to die in an accident, etc. Sorry if it sounded like I was blowing off a very serious condition. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 13:17:03 -0700 (PDT) Rose,When you know you have cardiac sarcoid it is hard to not think about the possible consequences. I do ok until my ticker starts acting up and then it's impossible to not think about it. Since my AICD was put in, I do have a certain peace of mind...like an ER in my chest. Even if there are no granulomas there can be inflammation r/t the sarcoid and that can lead to serious conduction problems. The echo was helpful to determine my ejection fraction. There are cardiac MRI's that can be done

(not with an AICD though) that can be helpful with dx cardiac sarcoid. There's also a CT (64 slice) that can look at the heart. I am seen at the s Hopkins Sarcoidosis Clinic in Baltimore, MD. Blessings,BeckyRose <mamadogrose (AT) hotmail (DOT) com> wrote: Becky, thanks for contributing more information about cardiac sarc. I'm still looking for the info I promised Lynne. I know that the granulomas like to congregate in the walls between the chambers of the heart. The conduction system runs through there, giving the sarc monster an opportunity. An echo will often miss those granulomas, unless the shape of a wall or chamber is altered. I know someone who had no idea she had sarcoidosis until she developed an arrhythmia. Her doctor sent

her to the E.R. where she had a cardiac arrest & was clinically dead. After resuscitating her, tests showed that sarcoidosis was the culprit. Thank goodness she went straight to the hospital. It's scary, but we are probably a lot more likely to die driving on the highway or crossing the street. So I try to keep it in perspective & concenrate on the things I have some control over. But you are absolutely correct that we need to push for testing if there is any suspicion of cardiac involvement. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Rose, about this heart thingDate: Fri, 13 Apr 2007 09:46:04 -0700 (PDT) Hi , Rose, and

all,I too have cardiac sarcoid. My AICD/pacemaker (automatic implantable cardioverter defibulator) was implanted January 25. I had palpitations, tachycardia, etc., for a long time. The defining tests to confirm my cardiac sarcoid were thallium cardiac stress tests (showed inflammation which shows up differently than athlerosclerosis), echo's, and 30 day event monitor that showed a-fib as well as other abnormalities when they were trying to decrease my prednisone. I'm on Cellcept and hope to be able to begin decreasing the steroids in 4 months (it takes that long for the Cellcept to get into the system well enough). The Cellcept will then take the place of the steroids but with side effects that are more manageable. From what I've read, there are many more people who have sarcoid with cardiac involvement than was previously thought. Cardiac sarcoid can kill...as two physicians have told me (before I had the AICD) "you could be fine one minute and dead on the floor

the next". This is b/c cardiac sarcoid can interrupt the electrical pathway in the heart and cause V-tach or V-fib. Not trying to scare anyone but want all to be aware. The Foundation for Sarcoidosis Research (FSR) is an excellent site to read about this and other sarcoid issues. Blessings,Becky L <jca_susan (AT) yahoo (DOT) com.au> wrote: Hello,I just thought i would share this experience with you as i have cardiac sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad but did show that the results were a lit bit abnormal. Now as far as i am concerned my specialist should have kept a closer eye on it and he didn't. As of September last year i have an "ICD" which stands for Implantable Cardioverter Device.

This now has to regualte my heart as i have scarring in my heart and have ended up with Ventricular Tachycardia where the heart can start beating too fast. I was having alot of palpatations at the time and believe the damage had probably already been done. I also have to take 2 different types of medications every day for the rest of my life even if the sarcoid disappears. I am only 33. All i want to tell you is to be very careful. If you think you are having ANY issues with your heart get it checked out straight away. There is no harm in being too careful. Rose is right - it is difficult to diagnose. Let me know if you have anymore questions. L. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. The average US Credit Score is 675. The cost to see yours: $0 by Experian. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. MSN is giving away a trip to Vegas to see Elton . Enter to win today. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

To My New Family

Love Lynne

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