McArdle disease (glycogen storage disease type 5): High CEA and CK

Posted by janicejuly51 @janicejuly51, Mar 5, 2022

My CEA are high. I have glycogen storage disease 5. My CK levels are high. Could they effect each other?

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Hello @janicejuly51 and welcome to Mayo Clinic Connect. I think it is very aware of you to try to make connections. I was able to find another discussion that mentions possible diagnosis of glycogen storage disease that I thought may be helpful: https://connect.mayoclinic.org/discussion/attacks-of-repeated-belching-pain-sweating-and-dizziness/

Have you ever been given reason to think they may all be connected by a doctor or are you just adding things up and wondering if you may be onto something?

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@amandajro

Hello @janicejuly51 and welcome to Mayo Clinic Connect. I think it is very aware of you to try to make connections. I was able to find another discussion that mentions possible diagnosis of glycogen storage disease that I thought may be helpful: https://connect.mayoclinic.org/discussion/attacks-of-repeated-belching-pain-sweating-and-dizziness/

Have you ever been given reason to think they may all be connected by a doctor or are you just adding things up and wondering if you may be onto something?

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Doctor Haller has retired he was my McAardles doctor. . I was trying to find a reason my CEA is going up.

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@janicejuly51

Doctor Haller has retired he was my McAardles doctor. . I was trying to find a reason my CEA is going up.

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Janice, may I ask why your CK and CEA levels were investigated? When will you be discussing the elevated levels with the doctor who ordered the tests?

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@colleenyoung

Janice, may I ask why your CK and CEA levels were investigated? When will you be discussing the elevated levels with the doctor who ordered the tests?

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My CK will always be high because of the McArdles. The CEA is tested every 3 months because I had colon cancer. They both measure the protein in my blood. Today I talked to a PA not my oncologist. My oncologist is on maternity leave. Because of the lack of information about McArdles they don't know if there is a correlation.

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There has got to be a doctor out there that knows if the protein from Ck and protein from CEA can affect each other.

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@janicejuly51

There has got to be a doctor out there that knows if the protein from Ck and protein from CEA can affect each other.

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Hi Janice, Mayo Clinic Connect is a network connecting patients with one another. Have you consulted your doctor to discuss the relationship between CK and CEA levels?

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