heredity, cardiac sarc

[Guest guest]

I think the heredity issue is tricky, because there is definitely a higher incidence in Scandinavians, so you'll see more family cases. As far as I've read, folks like me (mostly Irish & German) don't have an increased incidence. There does seem to be an increase in siblings, but not parents, which seems to indicate an environmental factor. I've also read more than once that in Japan the overall rate of sarc isn't higher than anywhere else, but that symptomatic cardiac sarc is much more common. Speaking of cardiac sarc, I saw a cardiologist last week because over the last year or so, I've had several funky heart episodes. The first time it happened I called my PCP the next morning & he ordered a 24-hour Holter monitor. My heart was acting up the night before & that morning when I woke up, but straightened up by the time I got the monitor & purred like a kitten the entire time I wore it! I just tried to ignore it the next couple of times it happened (every 2-3 months, lasting from a couple of hours to a day or so, but off & on). I never had any pain, dizziness, shortness of breath, etc. It's totally different from the atrial fibrillation that I had in 1994, which led to the sarc diagnosis by the hilar nodes on chest xray. Finally, I mentioned it to the sarc specialist I see at IU in Indy. He thought I should see this doc, who has experience with cardiac sarc. They did an echo (which I understand isn't very good at detecting cardiac sarc), along with a 48-hour Holter monitor. Hallelujah! My heart did its little tricks, first a couple of hours after putting it on, then the next night several times. It's weird to be glad your heart is acting funky, but I really wanted something on that monitor! I wore it from Thursday morning to Sat. morning. I wish I'd had it another day, because Saturday night, I was awake every hour or two with skips & other arrhythmias. But hopefully there will be enough for him to determine if I need a heart MRI or other testing. After pretty much ignoring it for over a year, I'm not too worried, but that possibility of sudden cardiac death is always under the surface. What's odd is that exertion doesn't trigger it; most of the time it starts at night. I've not been able to associate it with foods, meds, activities, even moods or stresses. I've consumed very little caffiene for years because of some of my meds, but occasionally I'll drink something that just grabs at me, but that doesn't trigger it. So, we'll just wait & see.

Sorry for the long spiel; just livin' up to my name!

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

To: Neurosarcoidosis From: mebramer@...Date: Mon, 13 Apr 2009 23:06:44 +0200Subject: Re: when i thought it couldnt get worse,, attention tracie

Rick, Your right most doctors say Sarcoid is not hereditary, I beg to differ for sure. I have it, then My Mother was diagnosed with it, she found out she has 2 cousins (they live in Norway) that have it, and then my Aunt, MyMothers sister was also diagnosed with it. So this family says it is hereditary. As far a NS, My Mother has not had problems, my Aunt is lung, and my Mom's cousin I'm not sure, but one is in a wheelchair would make me think possible NS?? We are a bunch of Norwegian's. hope this is helpful, Marla

On Mon, Apr 13, 2009 at 7:49 PM, Rick Jack <jack11973 (AT) yahoo (DOT) com> wrote:

Hi,

One of my doctors said N.S. is hereditary (most don't) but I have so many symptoms that my mother had and they never could figure out she really had. My mom's right side of her face would droop as well. I wish I could remember what her doctors called it. It's interesting you should mention that. We all have slightly different symptoms because the N.S. effects our nervous system in different locations. Mine is in my lymph nodes in my chest, while my mother had something going on in her brain. My grandfather (her dad) died of something mysterious (at the time) as well and I remember him having the same pains I do. Odd.

Hope all goes well for you.

Rick

From: jessicabouhamama <JessicAbouhamama (AT) aol (DOT) com>Subject: when i thought it couldnt get worse,, attention tracieTo: neurosarcoidosis Date: Monday, April 13, 2009, 12:17 PM

Well back from the ER all morning, .. i was never taken so fast. i had such head pain, my eye was buldging he said and my heart rate was way to high.

I am still waiting for the Rheumy to call back to say start the Cellcept. I have it in hand waiting.

There er was concerned about the eye and heart rate.. but as they gave me the pain meds my heart rate slowed.

I know in the past my right side of my face would droop . but not buldge.. hummm any ideas Tracie??

So now on my way to my family dr appt .

hope all is well with the group and rest and hope you have a pain free day.

Many Blessings A.

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