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ginny

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Reply with quote  #196 
Best to start a new thread.  This is an introduce yourself thread and some people do not read each of these posts and they will be difficult to search for those looking in the archives.
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Hoppyone

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Reply with quote  #197 
Ginny, you mentioned Wilson's Disease and I am wondering if there is a correlation between that and CVS. I recently had a blood test come back with extremely elevated copper levels and Wilson's Disease came back in a Google search. My Dr said it would be extremely rare if I had it given my age, but I had never heard of it until last week and now I read it here. My Dr is having me do a urine catch test and is running some additional tests as well.
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ginny

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Reply with quote  #198 

Wilsons Disease is a genetic disease and the diagnosis is by liver biopsy.  Your doctor must be monitoring your liver enzymes?

As far as we know, CVS is a functional disorder and not a disease.  There is no known correlation to Wilsons.  I do not recall anyone having both conditions but Wilsons is one disease with some symptoms similar to CVS. Your doctor can order an eye exam to check for copper deposits in your eyes-- typical for Wilsons.  How is the high copper being treated?







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Hoppyone

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Reply with quote  #199 
She ran all of the tests again including a heavy metal panel and a urine catch test. My levels came back at the high end of normal so for now she is just watching it.

I just thought it was weird that I had never heard about Wilson's Disease before and then I see it here as well.

This is the main reason I usually don't Dr Google myself. I just freaked out when I saw how high it was and didn't think before my fingers started typing..lol
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ginny

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Reply with quote  #200 
Glad your doctor is watching your levels.  If you are still uneasy, you might see a hepatologist and have more testing done.  Your current doctor might order an ultra sound of your liver and kidneys and keep track of basic functions.  When copper levels are high, and other things such as ammonia, the liver might not be processing correctly.  For us, during the difficult time of elevated liver enzymes and copper levels, all meds had to be removed, a low protein diet was prescribed, so to help the liver to heal.

Biopsy showed damage but no Wilsons.  The liver is an organ that regenerates and all LFTs are now perfectly normal.  



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