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Wilsons Disease
I am curious if there are any others with Wilsons Disease in here??
i was adopted at the age of 7, i have recently found a bio brother with wilsons and found out my birth father had it too.I have a lot of neuro issues including muscle spasms and tremors, also optic neuritis in left eye with abnormal VER and abnormal ( cant think of the name of the test) on my legs. what are the chances of me developing this disease?
Dr. Simran,
We had started with Galzin, but it gave my daughter horrible nausea and vomiting. We are sure glad there is a Zinc OTC alternative Gluzin. Gluzin is also the recommended OTC Zinc of choice by the Wilson Disease Association - www.wilsonsdisease.org.
We had started with Galzin, but it gave my daughter horrible nausea and vomiting. We are sure glad there is a Zinc OTC alternative Gluzin. Gluzin is also the recommended OTC Zinc of choice by the Wilson Disease Association - www.wilsonsdisease.org.
Just joined this Forum, great discussions!
There are also a lot of WD members at Inspire. It's good to reach out with this and other disease.
My daughter and I both have WD. I have had WD for more than 13 years, while my daughter was diagnosed about five years back. We are both stable and on a Zinc only treatment - Gluzin (www.gluzin.com). Gluzin is formulated from zinc gluconate, which causes less stomach irritations. I take the 50 mg 3x a day, while my daughter takes the 25 mg smaller capsule size, because she has a hard time swallowing. We have been on Gluzin for more than a year now, and our copper level is in check!
There are also a lot of WD members at Inspire. It's good to reach out with this and other disease.
My daughter and I both have WD. I have had WD for more than 13 years, while my daughter was diagnosed about five years back. We are both stable and on a Zinc only treatment - Gluzin (www.gluzin.com). Gluzin is formulated from zinc gluconate, which causes less stomach irritations. I take the 50 mg 3x a day, while my daughter takes the 25 mg smaller capsule size, because she has a hard time swallowing. We have been on Gluzin for more than a year now, and our copper level is in check!
Hi, it seems you and others on this forum have experience and much more knowledge than me on Wilson's disease. I am a 21 year old male from United Kingdom and for nearly 4 years now I have been suffering from symptoms with no diagnosis, which over time has just gotten worse. It initially started like I said just under 4 years ago when I was chronicly sick for weeks and I obviously saw my doctor who did a LFT and it came back abnormal and I was then diagnosed with Gilbert syndrome which I understand is harmless. Shortly after I developed terrible pain in my upper abdomen around my liver and many more tests were run for alergies, ibs and other similar things. It was also found by ultrasound that I have a fatty liver. These symptoms have never left me with this chronic sickness and abdominal pain, however in the past few months I have developed very high blood pressure of 190/120 (with no history of heart problems in my family). A medical student friend of mine suggested about 2 weeks ago I should be tested for Wilson's disease and she also said to check my eyes for possible k-f rings, of which I did notice these light rings around the edge of my eye, which is incredibly similar to this picture I found on the internet:
http://www.bmj.com/content/vol322/issue7281/images/large/livabc5.f2.jpeg
I hope you can access that picture and assist me in knowing if thats what the rings can look like? If not, they are visible on my eye when under light and appear like in that picture as a very light thin and several rings around the edge of my brown eyes. I would like to add that I am not overweight and I excersice regularly and have a very good diet, yet these symptoms stay and have done so for 4 years nearly.
All of this is runing my life and I really do appreciate any help, I do have a doctors appointment soon and will mention this.
http://www.bmj.com/content/vol322/issue7281/images/large/livabc5.f2.jpeg
I hope you can access that picture and assist me in knowing if thats what the rings can look like? If not, they are visible on my eye when under light and appear like in that picture as a very light thin and several rings around the edge of my brown eyes. I would like to add that I am not overweight and I excersice regularly and have a very good diet, yet these symptoms stay and have done so for 4 years nearly.
All of this is runing my life and I really do appreciate any help, I do have a doctors appointment soon and will mention this.
If you are unsure about Wilson's Disease, ask your doctor to order a 24 hour urine/copper test. If it comes back over 100ug/dl, then you are a high candidate for Wilson's since your ceruloplasmin and serum copper tests were off. My son had low ceruloplasmin, high serum copper and a 24 hour urine/copper of over 1200! He had tremors, drooling, slow gait, slurred speech. He was treated but died a year later from other complications. A slit lamp test could be done if the 24 hour urine/copper is high but not everyone with Wilson's has KF rings. The final verification would be a liver biopsy but if you have low ceruloplasmin, high serum copper and very high 24 hour urine/copper, you most likely would have Wilson's. Ask for that 24 hour test immediately!
Patrick
Patrick
i have been having hand, leg & head tremors since i was 12 years .. i consulted a doctor lately they did some blood check ups which are Serum copper & Serum Ceruloplasmin tests. My results were Serum Copper 51.0 mcg/dl & Ceruloplasmin 0.15 g/L. MRI was normal other than a small choroid fissure cyst 8 x 3 mm. As for my family my grandmother has Parkinson's disease though so far non of my siblings or any relative had an issue like this. I've searched google and many articles refer this level of Ceruloplasmin & copper level might be Wilson's disease, but as per doctor he cant be sure of it. I haven't so far had any kind of liver problems but still i haven't done any check ups. Please clear my doubt if this is just an essential tremor or could this be any other disease such as Wilson's. And also is there anything i should be worried if the Serum Copper level is at that level.
My doctor put me on Reacted Zinc: (as TRAAS Zinc Glycinate Chelate) by Ortho Molecular Products (3017 Business Park Dr, Stevens Point, WI 54481), a simple supplement that doesn't require a doctor's prescription.
or to any doctors that see this......
Is Zinc Sulphate just as effective as Galzin for maintence therapy for Wilsons Disease? Is there much difference between the 2 products regarding whats in them..?
Thanks in advance
M
Is Zinc Sulphate just as effective as Galzin for maintence therapy for Wilsons Disease? Is there much difference between the 2 products regarding whats in them..?
Thanks in advance
M
Hi Jules
Hope your feeling better.
The KF ring isnt close to the pupils, its around the eye and can only be seen through a slit lamp
Is your LFT out of range?
If you want more detailed information copy and paste this link in your browser
http://www.wilsonsdisease.org/content_sub.asp@SUB_ID=39&CAT_ID=14.html
and Good Luck
M
Hope your feeling better.
The KF ring isnt close to the pupils, its around the eye and can only be seen through a slit lamp
Is your LFT out of range?
If you want more detailed information copy and paste this link in your browser
http://www.wilsonsdisease.org/content_sub.asp@SUB_ID=39&CAT_ID=14.html
and Good Luck
M
Hey, I'm being tested for Wilson's Disease, as ordered by a neuro I saw for the first time this week. In addition to this test, he also ordered a test for myasthenia gravis.
My serum copper level came back as 92, and my ceruloplasmin came back as 24, both low-normal. Since I got these values from my GP's office (had the results forwarded there), I haven't heard any commentary from my neuro on them. The acetylcholine receptor antibody test results are still pending.
I think I was tested for Wilson's because I'm having tremoring in both hands, though more so in one hand than the other, along with a slough of other symptoms. He did look at my eyes, though, and at the time, I didn't know why he was so interested in them...but after reading about Wilson's Disease online, I can see why. For some time now, I've had a ring of orange/gold/brown close to my pupils, within the iris, but I always thought this was just part of the color of my eye--and people would always compliment me on having such beautiful eyes, so I'm rather shocked that this could potentially be such a bad indicator of an underlying problem.
If you want to know more about my symptoms/tests, you can check out my journals or send me a message, if you'd like. I haven't updated my symptoms list in a few weeks, but I will do this soon......
My serum copper level came back as 92, and my ceruloplasmin came back as 24, both low-normal. Since I got these values from my GP's office (had the results forwarded there), I haven't heard any commentary from my neuro on them. The acetylcholine receptor antibody test results are still pending.
I think I was tested for Wilson's because I'm having tremoring in both hands, though more so in one hand than the other, along with a slough of other symptoms. He did look at my eyes, though, and at the time, I didn't know why he was so interested in them...but after reading about Wilson's Disease online, I can see why. For some time now, I've had a ring of orange/gold/brown close to my pupils, within the iris, but I always thought this was just part of the color of my eye--and people would always compliment me on having such beautiful eyes, so I'm rather shocked that this could potentially be such a bad indicator of an underlying problem.
If you want to know more about my symptoms/tests, you can check out my journals or send me a message, if you'd like. I haven't updated my symptoms list in a few weeks, but I will do this soon......
Hello Me4365,
The following information would be of great help.
Wilson's disease or hepatolenticular degeneration is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatric symptoms and liver disease. It is treated with medication that reduces copper absorption or removes the excess copper from the body, but occasionally a liver transplant is required.
The condition is due to mutations in the Wilson disease protein (ATP7B) gene. A single abnormal copy of the gene is present in 1 in 100 people, who do not develop any symptoms (they are carriers). If a child inherits the gene from both parents, they may develop Wilson's disease. Symptoms usually appear between the ages of 6 and 20 years, but cases in much older patients have been described.
Various treatments are available for Wilson's disease. Some increase the removal of copper from the body, while others prevent the absorption of copper from the diet. In general, a diet low in copper-containing foods (mushrooms, nuts, chocolate, dried fruit, liver, and shellfish) is recommended.
Generally, penicillamine is the first treatment used. This binds copper (chelation) and leads to excretion of copper in the urine. Hence, monitoring of the amount of copper in the urine can be done to ensure a sufficiently high dose is taken. Penicillamine is not without problems: about 20% of patients experience a side effect or complicaton of penicillamine treatment, such as drug-induced lupus (causing joint pains and a skin rash) or myasthenia (a nerve condition leading to muscle weakness). In those who presented with neurological symptoms, almost half experience a paradoxical worsening in their symptoms. While this phenomenon is also observed in other treatments for Wilson's, it is usually taken as an indication for discontinuing penicillamine and commencing second-line treatment. Patients intolerant to penicillamine may instead be commenced on trientine hydrochloride, which also has chelating properties. Some recommend trientine as first-line treatment, but experience with penicillamine is more extensive
You can be in touch in with other members through http://www.wilsonsdisease.org/
Refer: http://en.wikipedia.org/wiki/Wilson's_disease
Best
The following information would be of great help.
Wilson's disease or hepatolenticular degeneration is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatric symptoms and liver disease. It is treated with medication that reduces copper absorption or removes the excess copper from the body, but occasionally a liver transplant is required.
The condition is due to mutations in the Wilson disease protein (ATP7B) gene. A single abnormal copy of the gene is present in 1 in 100 people, who do not develop any symptoms (they are carriers). If a child inherits the gene from both parents, they may develop Wilson's disease. Symptoms usually appear between the ages of 6 and 20 years, but cases in much older patients have been described.
Various treatments are available for Wilson's disease. Some increase the removal of copper from the body, while others prevent the absorption of copper from the diet. In general, a diet low in copper-containing foods (mushrooms, nuts, chocolate, dried fruit, liver, and shellfish) is recommended.
Generally, penicillamine is the first treatment used. This binds copper (chelation) and leads to excretion of copper in the urine. Hence, monitoring of the amount of copper in the urine can be done to ensure a sufficiently high dose is taken. Penicillamine is not without problems: about 20% of patients experience a side effect or complicaton of penicillamine treatment, such as drug-induced lupus (causing joint pains and a skin rash) or myasthenia (a nerve condition leading to muscle weakness). In those who presented with neurological symptoms, almost half experience a paradoxical worsening in their symptoms. While this phenomenon is also observed in other treatments for Wilson's, it is usually taken as an indication for discontinuing penicillamine and commencing second-line treatment. Patients intolerant to penicillamine may instead be commenced on trientine hydrochloride, which also has chelating properties. Some recommend trientine as first-line treatment, but experience with penicillamine is more extensive
You can be in touch in with other members through http://www.wilsonsdisease.org/
Refer: http://en.wikipedia.org/wiki/Wilson's_disease
Best
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