I am being tested for Wilson's Disease, a rare and incurable disorder. My doctor thinks I might have it considering my symptoms. I am currently going through testing for this disease. I have googled it many times and was wondering if there is anyone out there who has either heard of it or has it? Thank you for your time reading this question and have a blessed day.
I would actually like more information on how this is tested. I know that it is a thyroid disorder. The standard thyroid tests aren't finding anything, yet I have all the symptoms of thyroid issues. From what I understand, that's what Wilson's Disease is, and it's not exactly recognized by standard conventional medicine.
I was actually responding to this thread the other night when my computer was overtaken by some spyware!!! Yikes! I think I am clean now. Cross your fingers.
Anyhow, YES, Wilson's Disease is excess Copper in the body and it's usually genetic and runs in families from what I understand. It's NOT the thyroid disease. With treatment it is not life threatening and can be managed. You should do some searches on the internet and do some good research. When will you find out for sure if you have this disease?
Wilson's disease is an inherited disorder that causes too much copper to accumulate in your liver, brain and other vital organs. Another term for Wilson's disease is hepatolenticular degeneration.
Copper plays a key role in the development of healthy nerves, bones, collagen and the skin pigment melanin. Normally, copper is absorbed from your food, and any excess is excreted through bile — a substance produced in your liver.
But in people with Wilson's disease, copper isn't eliminated properly and instead accumulates, possibly to a life-threatening level. Left untreated, Wilson's disease is fatal. When diagnosed early, Wilson's disease is treatable, and many people with the disorder live normal lives.
Wilson's disease causes a wide variety of signs and symptoms that are often mistaken for other diseases and conditions. Signs and symptoms vary depending on what parts of your body are affected by Wilson's disease.
Signs and symptoms of Wilson's disease include:
Loss of appetite
Swelling of arms and legs
Yellowing of the skin and eyes (jaundice)
Diagnosing Wilson's disease can be challenging because its signs and symptoms are often indistinguishable from those of other liver disease, such as hepatitis. What's more, many symptoms may evolve over time, rather than appear all at once. Behavioral changes that come on gradually can be especially hard to link to Wilson's. Doctors rely on a combination of symptoms and test results to make the diagnosis.
Test and procedures used to diagnose Wilson's disease include:
Blood and urine tests. Your doctor may recommend blood tests to monitor your liver function and look for copper in your blood. Your blood may also be tested for the level of a protein called ceruloplasmin, which carries copper in your bloodstream. Your doctor may also use urine tests to measure the amount of copper excreted in your urine in a 24-hour period.
Brain scans. If you have signs and symptoms that indicate Wilson's disease is affecting your brain, your doctor may recommend tests to create images of your brain. Tests may include computerized tomography (CT) and magnetic resonance imaging (MRI).
Eye exam. Using a microscope with a high-intensity light source (slit lamp), an ophthalmologist checks your eyes for golden-brown discoloring (Kayser-Fleischer rings). The abnormal appearance is caused by deposits of excess copper in the eyes.
Removing a sample of liver tissue for testing. In a procedure called a liver biopsy, your doctor inserts a thin needle through your skin and into your liver. Your doctor draws out a small sample of liver tissue and sends it to a laboratory to test for excess copper.
Genetic testing. A blood test called DNA mutation analysis can identify the genetic mutations that cause Wilson's disease. This test is available at a limited number of medical centers and is done using a small sample of blood drawn from your arm or collected from a finger *****. It's recommended when other forms of testing support a diagnosis of Wilson's disease, or when other tests fail to provide conclusive results. Knowing the Wilson's disease mutations in your family allows doctors to genetically screen asymptomatic siblings and begin treatment before debilitating symptoms arise.
I must apologize for not responding in a timely manner. I have been fairly unwell for quite some time now. I haven't visited this site for the longest time. I just haven't had much energy lately along with the oh so many symptoms I have recently encountered. I have been well versed on this disease and given the results of certain tests I am doubtful I even have Wilson's Disease. As the days go by I become weaker and less able to manage the pain I have become so accustomed with. I am weary and dizzy throughout the day with a myriad of symptoms. Considering my worsened memory issues I am no longer able to meet with anyone in the professional health community without bringing someone to translate my situation for me in a clear manner. Weeping is much more common than before and my mental status is perpetually fuzzier than anytime in my life. My hopes of any sort of timely diagnosis fade with every passing day. I am challenged to remain positive during this difficult time.
At any rate I want to thank everyone for responding to my post. I am maintaining a hopeful thought life and appreciate any prayers etc. I am deeply grateful to the members of this forum. You were always there when I needed support and connection. I love you all and will visit this site more often in the near future. I choose to be open to the mysterious will of God. I have learned to respect respectable things. I wish everyone a wonderful day and may your lives be full of joy and happiness. I am deeply honored by the feedback I have received thru MadHelp.
I heard of this last night on an episode of "House". Our son developed Schizophrenic symptoms in 2009. No testing, the therapists just assume that he is schizophrenic and none of the phycotic medications have helped.
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