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Cathy Bergmann - Asymptomatic
Onset of symptoms: age 9 Birthdate: 6/2/60 |
| Medications: Penicillamine, Zinc Acetate (Galzin) | |
| How My Wilson's Disease was Discovered | |
| My oldest brother became ill in is 5th grade year (1969). They thought it was appendicitis, but the blood tests were never conclusive. After school was out that year he went into the hospital for tests. He kept getting worse, not better. Then the original doctor went on vacation. The filling in doctor was a life-saver. He had recently read something about Wilsons Disease and did another test on Steve and diagnosed it. The rest of the family (at the time 7 children) were tested. 3 more of us were found to be asymptomatic. We were sent to the University of San Francisco later that year for a month of tests that confirmed the Wilson's Disease in the rest of us. My youngest brother was born that year and when he was 3 or 4 was also diagnosed asymptomatic. We were all on penicillamine. In 1988 my older sister died from Wilson's Disease. She stopped taking the medication for "personal reasons" (that we will never know)- in about 1983- and within five years she was dead. By the time she became so ill she needed a new liver.
I believe I also was starting to have symptoms in late 1995 early 1996. On my regular checkups to the doctor my liver enzymes were starting to elevate. I went to a specialist here, but they couldn't find anything wrong. However, I was having leg cramps all the time at night and my hands were very shaky. I put the shaking hands off to being hungry, but look back now and don't think so. In January of 96 I switched from Penicillamine to zinc. I was initially started on the 25mg three times a day of the zinc and had lots of problems with nausea and vomiting. I also was an off-site case for Dr. Brewer, but the 3 month urine tests kept coming back really high in copper. They were thinking I wasn't taking the medication. After two tests that were coming back abnormal I went to the University of Michigan because none of the doctors I was working with in AZ would have figured it out. They put me on the 50 mg 3 times a day of zinc and also had me start drinking purified water. After two years now on zinc, my copper levels are in the range that Dr. Brewer wants them and I feel better than ever. No more leg cramps at night and no hand shaking. |
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| Additional Comments | |
| Don't mess with your medications! Take them as directed. | |
| Contact Info | |
| Cathy Bergmann (cpb9294@aol.com) |
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