Old 07-08-2009, 09:16 AM #1 (permalink)
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Default Anybody Been Tested for Wilson's Disease?

Since 1999, I have had slightly elevated enzymes and my gastroentrologists can not come up with a reason this is happening, he has been tracking this for ten years. I had a strange reaction to the anesthesia during my surgery and he thought maybe I experienced chemical induced hepatitis. I have two questions about elevated liver enzymes. Is there a relationship between elevated liver enzymes and muscle atrophy? Has anyone been tested for Wilson's Disease? I am now going to get a liver biopsy, yippee!

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Old 07-08-2009, 09:34 AM #2 (permalink)
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TOM

what liver enzymes? I have had elevated liver enzyems since the start of my sx. But at first they thought it was from anesthesia used during my c section. Well, they would go down and then back up but never really normal. My Gastro doc said it was probable a virus or something. Mine are AST & ALT. Also have a abnormal low white count. I was tested for hepatitis as well, and came back neg. My liver was not enlarged but they did do a scan on it and was fine. I will tell you that a liver biopsy is NOT fun. My MIL had one and she said very painful. IT was weird because they fond on mri that she had masses in her liver. We all though for sure she had cancer as she lost a lot of wieght. Well, her biopsy was normal and the masses went away! very strange, our bodies. Good luck with that! Have they done a CT scan on it? Did they see anything? And, do they think this 'chemical induced hepatitis' is from 10 yrs ago?

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Old 07-08-2009, 10:38 AM #3 (permalink)
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That is so strange..my husband just went for the blood test yesterday for Wilsons disease. He has over the top copper in his blood! They can't figure out why he has such a high level in his body. However, even after years of antibiotic therapy my hubby's liver enzymes have been normal. I am slightly boggled by this recent development.
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Old 07-08-2009, 10:44 AM #4 (permalink)
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April, mine are the AST and ALT also. I think after ten years it would not be due to the anethesia. My bloodwork does not show any abnormalities except for high trigycerides, which could also be causing the elevated enzymes. My CT scans show an enlarged spline, but my liver looks and feels good. I have had a kidney biopsy, it was extremely painful, so I am prepared for this liver one. The Dr said it should be a little easier than the kidney one.
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Old 07-08-2009, 10:49 AM #5 (permalink)
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Kelly, I have been told that Wilson's disease can cause symptoms that can be confused with ALS symptoms. The high level of copper is one of the signs of Wilson's Disease, I beleive it is treatable, I kind of hope I have it, isn't that weird.
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Old 07-08-2009, 12:15 PM #6 (permalink)
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Tom~

NO it is not weird! We all want to find out what is wrong and pray for treatment. Keep me informed on your liver situation,seeing as we have a similar issue in that area. I have not gone back for further testing, I will soon. I was very burned out and just plain 'done' with going to doctors!

Take care.
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Old 07-08-2009, 02:36 PM #7 (permalink)
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I haven't heard about a relationship with these liver enzymes and Wilson's disease, but there is a high correlation between elevated liver enzymes and the glycogen storage diseases, especially in the case of the disease I have, late onset acid maltase deficiency, GSD type 2. Also, patients and doctors are warned to be aware of anesthesia risks with acid maltase deficiency.

Years ago, before muscle symptoms arose, a doctor noticed elevated liver enzymes and later tests showed an enlarged liver. Also, later tests even showed that my digestive muscles in the stomach seemed to be largely paralyzed. Nobody suspected a myopathy, although I was tested for Wilson's. It was 15 years later that skeletal muscle weakness became a problem.

This disorder is hard to diagnose because muscle biopsies may not yield consistent results in adult cases. Specific enzyme or genetic tests must be performed.

I'd strongly recommend based on my on lessons learned that you try to keep from speculating on a particular disease, however. Instead, you could ask your physician if they would recommend a referral to a teaching hospital or similar place. I went to Mayo. My internist and neuromuscular specialist know almost nothing about the specifics of these rare diseases, so they were happy to collaborate with the Mayo docs.
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Old 07-08-2009, 03:20 PM #8 (permalink)
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Keane,
Is this disease genetic? If yes, is it dominate or recessive? Anyone else in your family experiencing any problems? Was your disease confused with ALS? Sorry, I have alot of questions. Thanks in advance for answering them.
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Old 07-16-2009, 08:44 AM #9 (permalink)
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I recieved the results of my liver biopsy, no Wilson's disease just a slightly fatty liver and high trigylcerides, now I have another prescription.
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Old 07-16-2009, 09:46 AM #10 (permalink)
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Oh that is too bad. Did they test your blood for copper or they just relie on the liver? the copper would be stored there? Did they give you a statin? I also have/had high trigs with my alt/ast, and that is strange because I dont eat fatty foods, I dont eat red meat, sweets, butter and all that, I am a very healthy eater. Did they bring up NASH? (non alcoholic fatty liver disease). ALso in 'keane' post, did you mention the glycon storage disease? I cant remember but was it you that had the possibility of CMT?

Well, Best wishes to you.

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Old 07-16-2009, 11:50 AM #11 (permalink)
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April, The biopsy was the one sure way to tell what the current condition of my liver. I am now taking Gemfirizole for the high triglycerides. I didn't ask about anything else, and yes, I feel like CMT is still a possibility for me along with Monomelic Amyotrophy and some sort of adult onset of spinal muscular atrophy, who really knows.
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