symptoms of cardiac sarcoidosis

[Guest guest]

Hi all. I was wondering if those of you who have cardiac sarcoidosis

could tell me what your symptoms are and how they determined you have

cardiac sarc vs. a more normal cardiac problem. Thanks a million.

-

[Guest guest]

Hi all. I was wondering if those of you who have cardiac sarcoidosis

could tell me what your symptoms are and how they determined you have

cardiac sarc vs. a more normal cardiac problem. Thanks a million.

-

[Guest guest]

, here is an excellent site that explains cardiac sarc, with the symptoms, testing, etc. It's from FSR (Foundation for Sarcoidosis Research), which we should all have bookmarked. The home page is www.stopsarcoidosis.org.

Here is the link for cardiac sarc: http://www.stopsarcoidosis.org/sarcoidosis/cardiac.htm

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: wendy_cidp@...Date: Thu, 20 Sep 2007 22:18:28 +0000Subject: symptoms of cardiac sarcoidosis

Hi all. I was wondering if those of you who have cardiac sarcoidosiscould tell me what your symptoms are and how they determined you havecardiac sarc vs. a more normal cardiac problem. Thanks a million.- More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. Get more!

[Guest guest]

Thanks Rose. I started having chest tightness and shortness of breath

2 weeks ago. Thought it was most likely stomach related or the

leftovers of the HSV-1 pneumonia I just got over but my heart rate

when tested got very high (136) with just a short walk. So now the

doctor thinks something is up with my heart. I have been diagnosed

with neurosarcoidosis by exclusion, no biopsies or anything, so

linking any heart problems to sarc might be a stretch for them. I had

an echocardiogram yesterday. Chest X-ray on Saturday and an upcoming

stress test. I started beta blockers and baby aspirin 2 days ago and

feel much better. Don't know if that indicates anything. Just one more

hurdle. I can't even keep up with this chat group. Just keep pumping

you guys for info then disappear into the fog. Sorry. Do care about

you all even though I don't have the energy to write!

-

>

>

> , here is an excellent site that explains cardiac sarc, with

the symptoms, testing, etc. It's from FSR (Foundation for Sarcoidosis

Research), which we should all have bookmarked. The home page is

www.stopsarcoidosis.org.

>

> Here is the link for cardiac sarc:

http://www.stopsarcoidosis.org/sarcoidosis/cardiac.htm

>

>

> 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@...: wendy_cidp@...: Thu, 20 Sep 2007 22:18:28

+0000Subject: symptoms of cardiac sarcoidosis

>

>

>

>

> Hi all. I was wondering if those of you who have cardiac

sarcoidosiscould tell me what your symptoms are and how they

determined you havecardiac sarc vs. a more normal cardiac problem.

Thanks a million.-

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

_mini_5G_0907

>

[Guest guest]

,I have had cardiac sarc all along and the doctors I saw just didn't know enough about it to diagnose me except with pulmonary sarcoidosis (and a liver granuloma) in 1994. I had skips, racing and pounding heart, etc. Only when I went to s Hopkins in 2005 to the sarcoidosis clinic did I get someone to really pay attn to what was going on with my heart. My conclusive tests were 2 thallium stress test that showed a "patchy uptake" during exercise but most importantly during rest. My JH doctor said that was a HIGH indicator of cardiac sarcoidosis. Then I had a 30 day event monitor on while decreasing my prednisone and had a-fib as well as some other ectopic beats. Another indicator. The cardiologist at that time (not JH) told me all was ok with my heart. As soon as I returned from JH I immediately changed cardiologists. I had an AICD placed in

January. They knew I needed it but did an EP study in the cardiac OR to induce v-tach/fib and sure enough I flew right into it. If they had done the EP study and I hadn't gone into v-tach/fib, they would not have placed the AICD. I have been on atenolol for yrs to slow my heart down (since 1995) so you would think that the dr at the time would have thought about the sarcoidosis affecting my heart. He didn't. He just thought it would all go away. Needless to say, I've been through several doctors. The cardiologist yesterday told me my left atrium is enlarged b/c of the sarcoidosis and stiffening plus pressure from the pulmonary hypertension...my RVSP number on my echo is 45 which is very high (not considered mild) so this has been going on for awhile. My rheum increased my pred last Monday b/c my heart was racing/pounding and my pcp had already doubled my atenolol. I have been in a flare so this was to help that. Hope this info helps.Blessings,Beckywendy_cidp wrote: Thanks Rose. I started having chest tightness and shortness of breath 2 weeks ago. Thought it was most likely stomach related or the leftovers of the HSV-1 pneumonia I just got over but my heart rate when tested got very high (136) with just a short walk. So now the doctor thinks something is up with my heart. I have been diagnosed with neurosarcoidosis by

exclusion, no biopsies or anything, so linking any heart problems to sarc might be a stretch for them. I had an echocardiogram yesterday. Chest X-ray on Saturday and an upcoming stress test. I started beta blockers and baby aspirin 2 days ago and feel much better. Don't know if that indicates anything. Just one more hurdle. I can't even keep up with this chat group. Just keep pumping you guys for info then disappear into the fog. Sorry. Do care about you all even though I don't have the energy to write! - > > > , here is an excellent site that explains cardiac sarc, with the symptoms, testing, etc. It's from FSR (Foundation for Sarcoidosis Research), which we should all have bookmarked. The home page is

www.stopsarcoidosis.org. > > Here is the link for cardiac sarc: http://www.stopsarcoidosis.org/sarcoidosis/cardiac.htm > > > 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@...: wendy_cidp@...: Thu, 20 Sep 2007 22:18:28 +0000Subject: symptoms of cardiac sarcoidosis > > > > > Hi all. I was wondering if those of you who have cardiac sarcoidosiscould tell me what your symptoms

are and how they determined you havecardiac sarc vs. a more normal cardiac problem. Thanks a million.- > > > > > > > __________________________________________________________ > More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. > http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 >

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[Guest guest]

Sorry this is so late , but I just recently got internet access at home. I started having severe bradycardia, syncope and then I would turn around and go supertach. I have recorded verified pulses from 13 beats a minute to 235 beats per minute. The syncope got so bad I wrecked my car. Even with the pacemaker I still have some problems with v-tach, atrial tach and atrial fib. I have had to have ablation surgery, but they only got one side so part of the problem is still there. My problems are electrical, I had 85,000 pvc's in 6 mths according to the read out from the pacemaker. Sarc short circuits the heart....wendy_cidp wrote: Hi all. I was wondering if those of you who have cardiac sarcoidosiscould tell me what your symptoms are and how they determined you havecardiac sarc vs. a more normal cardiac problem. Thanks a million.- __________________________________________________