I have a very high calcium score. What next?

Posted by dpframing @dpframing, Aug 24, 2018

Just joined the site and I'm looking to share with others who have had a high calcium score. I found out today that mine is 2996 and I am scared by this. I am 61 and I am totally asymptomatic. Now I feel like a walking time bomb. I am thinking of requesting an angiogram to see if there's any narrowing anywhere and if it can be corrected with a stent. After a second heart doctor told me that the plaque buildup might be uniform over the course of years with no big problem areas, I am encouraged. But the score still freaks me out, specifically my LAD at 1333. I don't smoke or drink but I have to lose 40 lbs.

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I see this is 2018. How are you now?

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@keithl56

How bad was the 3 limb EMG? I just saw a clinical internal note debating whether to do it in one day or two. How long did it take? I was wondering why they would consider doing them over two days - time or discomfort? I had 2 separate ulnar nerve EMG's several years ago due to injury and they were extremely unpleasant to say the least. Especially when they placed the needles in the pad of my palm.

Hopefully I'll escape the ALS diagnosis! I am somewhat concerned about what seems to be some leg weakness, but it could be just anxiety causing this perception.

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My 3 limb emg in 2023 was quite tolerable for me. It didn’t take very long at all. Maybe an hour total, including the placement. I can’t recall the details, but I dealt with a tech person and a neurologist. Separate from the one who ordered the tests. He reviewed everything right there and told me the results immediately.

I also had EMG on my legs for different reason in 2003 and that was more uncomfortable. Not sure why, but still tolerable. Maybe I have a high pain tolerance. Idk, but for me it was quite doable. I think you need to have the right mindset.

Good luck with everything.

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How bad was the 3 limb EMG? I just saw a clinical internal note debating whether to do it in one day or two. How long did it take? I was wondering why they would consider doing them over two days - time or discomfort? I had 2 separate ulnar nerve EMG's several years ago due to injury and they were extremely unpleasant to say the least. Especially when they placed the needles in the pad of my palm.

Hopefully I'll escape the ALS diagnosis! I am somewhat concerned about what seems to be some leg weakness, but it could be just anxiety causing this perception.

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@keithl56

They have run all of the tests to exclude other possible causes of my fasciculations except for ALS and BFS. My pending EMG's will be definitive.

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I see. Best of luck. I had the 3 limb EMG test. I was super anxious about it. I was certain I had ALS or Parkinson’s, even though I had no weakness. Thankfully, I had neither.

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@celia16

Why would the neurologist say they suspected ALS without more confirmation? Did they say why they thought that?

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They have run all of the tests to exclude other possible causes of my fasciculations except for ALS and BFS. My pending EMG's will be definitive.

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@keithl56

Could be worse! My neurologist thinks I may have ALS (next appointment in a week) and the only drug that might slow it down (only give another 4-6 months of delayed symptoms) is $145,000/yr and no indication whether insurance will cover it since it is an orphan drug. I might try a clinical trial at Jefferson since that won't cost anything, but there is a 50/50 chance that I'll actually get a placebo.

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Why would the neurologist say they suspected ALS without more confirmation? Did they say why they thought that?

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@missey

I hope you have gone to the mayo clinic.com website and done your research on niacin! It is very dangerous, which is why doctors don’t use it as a medication! You were playing mortality roulette.

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Glad you posted about this, Missey!

Self service medicating comes with risks for those not educated.

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@dejones270

I started taking two 500 mg. doses of slow release niacin daily and my Lp(a) went down dramatically.

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I hope you have gone to the mayo clinic.com website and done your research on niacin! It is very dangerous, which is why doctors don’t use it as a medication! You were playing mortality roulette.

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@cindywinger

I TRIED for 6 years to get them to do an angiogram after a calcium score of 1100+ and extreme family history of CAD. I was much like you - tests were perfect, I exercise and eat decently. they wouldn't do it because I had no symptoms. I had Covid in Feb 2023 and then was short of breath doing the smallest of things after I felt covid had resolved. THANKFULLY, they decided at that time to do the angiogram, and I had 3 major blockage and had CABG in April of 2023. Very frustrating, but I guess I am glad the "big one" wasn't my first symptom!

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Good for you!
When my mom was going through cancer treatments, I learned something.
That YOU have to be the most ferocious advocate for your health.
My doctor at first did not want to order an angiogram. I insisted.
Doctors may have the best intentions, but they are not all-knowing. And they have bad days too. And maybe some of them don't really care. I don't know. All I know is you have to be on the front line, fighting for your health. And the health of your loved ones.

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