Getting a diagnosis

Challenges you have, or are, going through in obtaining a proper diagnosis.


In Limbo I think

  • By Cornbred · New reply April 18, 2013
  • 7 replies
  • Well over the past year I have been going thru doctor visits after doctors visits. March 2012 I went to the doctor for weird back pain, like I was being shocked with a taser. She sent me back to work ...

they gave me the wrong urine container!

  • By seamonkey987 · New reply April 14, 2013
  • 6 replies
  • The lab screwed up and gave me the wrong container to do my 24hr urine collection. what should I make sure I get when I go back? I am feeling so let down ...

left upper abdominal pain

  • By seamonkey987 · New reply April 12, 2013
  • 6 replies
  • hi recently I have been getting abdominal distention and pain in my left upper abdomen. I know that wilson's can affect the spleen and I have an appointment for an ultrasound I was wondering if any of ...

Could someone help me please

  • By seamonkey987 · New reply April 9, 2013
  • 4 replies
  • I have just recently stumbled across this website and found out about this disease. I was trying to find out what is causing my elevated liver function test results which is how i found out about this ...

copper toxic ? wilsons disease

  • By agentmax · New reply March 26, 2013
  • 14 replies
  • hi all, im new to this discussion group... i hope some of you can share your thoughts with my predicament.... 46 year old woman from australia chronic daily nausea since june last year some bloating ...

14 YO diagnosing still!

  • By moocow5598 · New reply March 24, 2013
  • 3 replies
  • My 14 y.o. recently ran the gambit of test again to see where her ceruplasmin and copper levels were. They also sent out for a genetic test for Wilson's but this has not returned. Our doctor has also ...

No definitive Diagnosis

  • By Iowa · New reply March 15, 2013
  • 50 replies
  • Hello! My husband is 41 years old and was stricken with a neurological presentation about 5 months ago. He went from being a very healthy, active husband and Dad to almost a non-functioning, lethargic ...

My numbers....please help

  • By ksue12 · New reply March 12, 2013
  • 3 replies
  • Hi. I have, in the past year or more, suspected Wilson's disease, but didn't really take it seriously. During this past year, my liver enzymes have risen and have slowly come down, but still above normal ...


  • By ome · New reply March 9, 2013
  • 3 replies
  • my brother has been diagnosed 8 months ago with wilsons disease his latest reports of 24 hr. copper urine test and serum ceruloplasmin has come is the reports showing that whether he is improving or not ...

Blue ring in toilet from MY copper??

  • By ksue12 · Posted March 8, 2013
  • 0 replies
  • I was just thinking how I've told a few doctors over the last few years that I have been having a blue ring around the toilet in my home that I use the most. You see, I get up in the middle of the night ...

Update on 14 yo daugther

  • By moocow5598 · New reply March 4, 2013
  • 6 replies
  • Our Gastro doc saw my daughter a couple weeks ago and ordered a lot of test to still try and rule out Wilson's. My daughter has had a liver biopsy that came back normal, however, the copper was slightly ...

Confused, need help.

  • By Rochelle56 · New reply February 28, 2013
  • 18 replies
  • I just had some lab work done on my 15 year old son who is having emotional issues, allergies, and has been diagnosed with POTS by a cardiologist. The lab he just had was not done by an MD, but through ...

low ceruloplasmin

  • By maykram · New reply February 21, 2013
  • 14 replies
  • Hi. I have been ill for many months now and am consistently having blood tests to find out the cause. I have elevated ALT levels and have been tested for Wilsons which shows a below normal ceruloplasmin ...

Just a few questions

  • By voto23 · New reply February 21, 2013
  • 7 replies
  • Hi All, This is my first post since joining this community a couple years ago. I have not felt well for MANY years and the last couple years have kept the possibility of Wilsons Disease in the back of ...

Can you diagnos Wilson's with DNA Testing?

  • By mslaurats · New reply February 18, 2013
  • 12 replies
  • My husband is a carrier for Wilsons. His father had the disease. When I got pregnant my genetic counselor led me to take a dna blood test to see if I was a carrier. My results, one person in Greece has ...


  • By agentmax · New reply February 17, 2013
  • 1 reply
  • ceruloplasmin 2.6 (.6 off being abnormally low) is this significant? urinary copper (not 24 hr) 17 hair analysis showed severe copper toxic, low zinc, very low molybdenum, and virtually no tissue potassium ...

Low RBC with increased bilirubin

  • By rupok · Posted February 8, 2013
  • 0 replies
  • To my latest lab report of CBC complete and bilirubin test. I have found that I have low RBC, WBC is decreasing , haemoglobin and platelets are in nearest normal range. Since Iron is needed to create ...

Not sure if symptoms fit

  • By gail-61 · New reply January 29, 2013
  • 29 replies
  • I am wondering how long people have symptoms before they are diagnosed? I have been having neurological problems for over a year. Eye drooping, difuculty walking, tremors. They seem to come and go and ...

wilsons or menkes

  • By lizard5966 · New reply January 29, 2013
  • 14 replies
  • Has any one heard of low serum plasmin levels and low urine. copper . Have hadcrazy symptoms since birturh no one has figured it out .my mother did toboth of my daughter have some similar ones and one ...

Wilson's ruled out. So defiency or craziness?

  • By Lphil · New reply January 22, 2013
  • 9 replies
  • Ok so here's the problem. I'm under investigation since last summer about Wilson's disease. Things are now pointing towards other things. But I'll start by the symptoms I have. Since my 20th birthday ...

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