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Wilson's Disease and High Copper in Kansas City

milica89
  • By milica89 · New reply 1:06 am
  • Discussion in Finding a doctor · 7 replies
  • I'm looking for a doctor with experience in diagnosing and treating high copper and/or Wilson's Disease in the Kansas City or St. Louis area. I have not yet been diagnosed but strongly suspect that this ...

Ceruloplasmin down to 12.5

Lisabonisa
  • By Lisabonisa · New reply yesterday at 10:04 pm
  • Discussion in Getting a diagnosis · 9 replies
  • Hi Everyone, I am new to the group. I have more tests lined up for both of my children tomorrow. My son's ceruloplasmin is down to 12.5 and his free copper is almost 50. He has many symptoms of WD and ...

Hypoparathyroidism

LondonChurch
  • By LondonChurch · Posted yesterday at 9:06 pm
  • Discussion in Getting a diagnosis · 0 replies
  • Does anyone have issues with Hypoparathyroidism and Hypocalcimia? My daughter was recently diagnosed with this and they are calling her an anomaly. There is no apparent reason for her to have these issues ...

Low, low and.... low...?

kittykatbat
  • By kittykatbat · New reply yesterday at 7:02 pm
  • Discussion in Getting a diagnosis · 1 reply
  • OK, my blood tests came back with low copper and low ceruloplasmin levels. My MRI came back normal and my 24 hour urine test came back low normal for copper. Is it even possible that I may have Wilsons ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted yesterday at 3:22 pm
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Somebody here take zinc with food? Or always 1 hr before?

Succubus
  • By Succubus · New reply yesterday at 9:58 am
  • Discussion in Treatment options · 14 replies
  • Hi everybody I have this question, if u take the zinc with food? Cuz that's what I have been doing for 9 years so I'm curious. My copper levels are low ...

Rising Cost of Cuprimine

copper3
  • By copper3 · New reply yesterday at 5:45 am
  • Discussion in Treatment options · 4 replies
  • Has anyone noticed a rising cost with Cuprimine? My insurance grandfathered me so I only pay $25.00 a month. Cuprimine is non covered for new policy holders on my insurance. The cost of the drug has gone ...

High Free Copper Level of 77

GingerLox
  • By GingerLox · New reply yesterday at 4:10 am
  • Discussion in Getting a diagnosis · 1 reply
  • We are searching for answers for my daughter's health problems. We had a copper test done and the results are abnormal. Does anyone know if the following lab results would suggest a possible diagnosis ...

Trientin

Tomcat20174
  • By Tomcat20174 · New reply April 14, 2014
  • Discussion in Treatment options · 22 replies
  • Also increased the price of your house trientine? Why become more expensive ...

opinion help

laurashaki
  • By laurashaki · New reply April 14, 2014
  • Discussion in Personal stories · 5 replies
  • hello my name is grettel and 31 years old. I was diagnostic with WD in 1998 since them i have been under treatment. also i have been received botox injection for about 6 years to relax my muscles spams ...

LFTs (aminotransferases) worse on Trientine

hopeisfree
  • By hopeisfree · New reply April 14, 2014
  • Discussion in Newly diagnosed · 7 replies
  • Hello, my 7 year old daughter was diagnosed in January with hepatitis. No neurological symptoms. She started trientiene 250 twice a day (always on an empty stomache, never missed a dose) and we were really ...

hypnotherapy

Tomcat20174
  • By Tomcat20174 · New reply April 14, 2014
  • Discussion in Treatment options · 6 replies
  • 2 years ago I'm dumb because of Wilson. I was wondering whether it would be effective hypnosis to accelerate the healing process. opinion? Experience ...

GI testing for Wilsons

mandmmom
  • By mandmmom · New reply April 14, 2014
  • Discussion in Getting a diagnosis · 9 replies
  • 49 yo female. I have been ill for the past three months. Fever, aches, tired all the time and abnormal lab work, especially my WBC being high, lymphocytes elevated, and elevated liver enzymes, ALT and ...

b complex, amino acids, electrolytes

romama
  • By romama · New reply April 13, 2014
  • Discussion in Treatment options · 5 replies
  • In 2011, someone on this site talked about a supplement containig - b complex, amino acids, electrolytes - that helps patients of WD. Does anyone rember what was that? Thank you ...

dumb

Tomcat20174
  • By Tomcat20174 · Posted April 10, 2014
  • Discussion in Personal stories · 0 replies
  • Hello! I am looking for a healed long ago silent symptomatic individuals. My question is how long was dumb? Tell me about your experience ...

Deep Brain Stimulation

ashwest
  • By ashwest · New reply April 8, 2014
  • Discussion in Treatment options · 14 replies
  • Hi, I'm wondering if anyone has had deep brain stimulation surgery to treat their neurological symptoms, and if so what were the results ...

Woody's War on Wilsons - just thought how nice of these kids to help out!!

cheesecake
  • By cheesecake · Posted April 7, 2014
  • Discussion in Personal stories · 0 replies
  • http://www.facebook.com/l.php?u=http%3A% 2F%2Fwww.nbc12.com%2Fcategory%2F240224%2 Fvideo-landing-page%3FautoStart%3Dtrue%2 6topVideoCatNo%3Ddefault%26clipId%3D1002 4213&h=mAQH_JLhN ...

Does anyone have a list of SNPs (with rs numbers) for WD ?

Researcher_1
  • By Researcher_1 · New reply April 7, 2014
  • Discussion in Genetics and diagnosis · 4 replies
  • I am presently researching Wilson's Disease and really appreciate anyone who can direct me to a COMPREHENSIVE list of SNPs related to WD. Thank you very much ...

Getting diagnosed - the beginning

kittykatbat
  • By kittykatbat · New reply April 5, 2014
  • Discussion in Getting a diagnosis · 4 replies
  • Hi all! I am brand new here. My mother had sever fatigue and other issues, had the copper ring in her eyes and never bothered going in to find out what was wrong with her. Both her and my dad died at ...

Looking for Options

Casia2014
  • By Casia2014 · New reply April 5, 2014
  • Discussion in Treatment options · 5 replies
  • I am the caregiver for someone who has been newly diagnosed with high copper. The doctor prescribed Syprine, but because of the high cost, the insurance won't pay for it. We are steering away from Penecillamine ...

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The Wilson Disease Association Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Wilson Disease Association, an Inspire trusted partner.