Doctor insights on:
Wilson's Disease Life Expectancy
Liver/neuro failure: Untreated, Wilson's disease can progress to liver failure and neurological disability and possibly death. With treatment, individuals with Wilson's disease have normal life expectancy. However, without treatment, individuals can expect issues with the brain, liver, eyes and psychiatric manifestations. Each individual is different so there are not set patterns of disease ...Read more
Pretty normal: Until the wilson's disease causes liver function compromise, you should function normally. With proper treatment you should not have any functional problems. ...Read more
It depends: Serum ceruloplasmin is often used and it is a poor choice as it misses about 30% of cases. Urine copper is my choice. If there's a family history or the diagnosis seems obvious, or urine copper is high, test the ATP7B gene. ...Read more
Multidisciplinary: A multidisciplinary medical team would serve a patient like this the best. You may need a GI specialist, neurologist, psychiatrist and PCP to work together to help patient with chronic issues. ...Read more
Don't self-treat: Usually an oral medicine to manage copper is all that's required. Be very wary of "alternative and complementary" remedies in this very serious illness, and discuss anything you may be using with your gastroenterologist. I'm going to assume you have real Wilson's and not the "pop" Wilson syndrome, which is not a real illness. Best wishes. ...Read more
Sam Wilson MD: 1878–1937, first described it and named it hepatolenticular degeneration. Perhaps the most treacherous diagnosis in general medicine, and unfortunately is still missed, which is bad because it's quite easy to manage and horrible if missed. There is also a bogus "wilson's disease" -- lay people are invited to self-diagnose as having subtle thyroid disease; no scientific basis. ...Read more
Wilson Disease: The main organs affected by copper accumulation are the liver and brain, so your symptoms are refer able to these organs. You may experience cognitive impairment, bradykinesia, parkinsonian-like motor symptoms, other motor and sensory problems, fatigue, esophageal varices, liver and kidney disease, and, of course, the copper colored rings in your eyes. Cardiac involvement can also intervene. ...Read more
Hi I suffer from serious cronic migraines almost 4 years now. I take lots of medicine. I also have wilsons disease.
Expert Tx: I hope you're under the care of the very best possible rxperts since it can make a big difference in Wilson's. If possible do some research to find the very best. The varied effects of the disease may interact w/ other conditions and frustrate efforts otherwise. The meds you need may have painful side effects and supportive psychotherapy can help you to understand and deal w/ this. ...Read more
Yes: Parkinson-like symptoms can be an initial manifestation of Wilson's disease. Wilson's disease usually occurs in younger people, however. If there is any confusion in diagnosis, Wilson's disease can usually be diagnosed through a combination of blood tests, urine tests, and/or an eye exam. Hope this helps. ...Read more
Excessive copper poisons the body organs, so the treatment is to remove the copper while stabilizing organs that may have been injured. This is called chelation. Several chemicals are used to remove the copper. See:
http://www. Ncbi. Nlm. Nih. Gov/pubmedhealth/pmh0001789/
also, www. Wilsonsdisease. Org. ...Read more
Could be bad: Wilson's disease leads to copper accumulation in the body - brain/liver/eyes and elsewhere - what it does to the liver? Well - imagine if you stuff your car engine with mud -things get, well, 'mucked up' - well that's the livers story - the liver does lots of stuff in the body - breaks down bad stuff, makes good stuff - and, is in the center of the circulation highway -so, muck up the liver and.. ...Read more
No: Wilson disease is a genetic disorder.Get a more detailed answer ›
Need tests: Most cases of wilson disease show symptoms between childhood and early adulthood, some may present in their 30's and 40's. Diagnosis is made by blood, urine tests and an eye examination for kayser-fleischer rings (copper deposit around the cornea). Liver biopsy and genetic tests are also options. Not all patients experience the same set of symptoms or timeline, so thorough testing is important. ...Read more
Varies: Wilson's in infamous as an elusive diagnosis, which is unfortunate because it is so deadly if missed but easy to treat if found early. Usually the liver enzymes are up for a few years before the person gets super-sick. This the time during which we hope to make the diagnosis. ...Read more
ATP7B: This is routine and is available upon request from the major gene labs. ...Read more
Need more workup:
Low ceruloplasmin by itself is not diagnostic of wilson disease.
Decreased ceruloplasmin and blood copper concentrations and increased urine copper levels may indicate wilson disease. Definitive diagnosis may require a liver biopsy. ...Read more
No: Prenatal vitamins taken during pregnancy offer more help than potential side-effects unless a woman already has a severe metabolic problem. Wilson disease is a metabolic problem causing an over accumulation of copper. Vitamins do not cause it. However, vitamins can contain an excess of certain minerals and may not be necessary in the non-pregnant state. ...Read more
It's your choice: Managing Wilson's is usually very easy and if your personal physician feels comfortable with it and knows what to watch for, and you're good with it, stay with him/her. ...Read more
Why do wilson disease patient have a low ceruloplasmin level? Is it due to wilson disease itself or low production by liver?
Minor mystery: We do know that the liver tends to underproduce ceruloplasmin in Wilson's, but this is only the case in about 2/3 of patients and it is famously unreliable as a way of screening. The exact mechanisms still haven't been sorted out. ...Read more
I'm a patient of wilson disease and I want to know if natural alkaline water pH 9.1 to 9.7 will help me to combat this disease or if normal waterissame?
THERE ARE NO GOOD: Scientific studies that prove or disprove this as a therapy for this condition. ...Read more
I have Low caeruloplamin 0.19g/L and low serum copper 12.5 umol/L - units (Australian). Do I have Wilson Disease? Or Copper deficiency? Thanks.
Finish workup: If there is any concern at all that you have Wilson's, get a proper screen -- urinary copper and perhaps a genetic screen if you've got suggestive symptoms. Missing Wilson's leads to one of the most grisly deaths possible. Managing it is easy. Your ceruloplasmin is trivially low and reference ranges are set so that a few percent of healthies are outside on either end. ...Read more
What to do if I have rings around my eyes when I was a preteen. If you have kayser-fleischer rings does it mean you have wilsons disease or could it be something normal?
Let's sort this out: You had rings around your IRISES (actually the plural is irides, but never mind), not your "eyes" (like a raccoon) when you were young and they went away? That's the opposite of what happens with Kayser-Fleischer rings. If you're normal at 35, you don't have Wilson's disease. What to do is nothing. Give my regards to Broad Street. (My compliments for spelling Kayser-Fleischer correctly, BTW.) ...Read more
Can a carrier (heterozygote) of the wilson disease gene donate part of his/her liver tissue for a living related donor transplant to a patient?
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