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Nicki Karst - asymptomatic
Onset of symptoms: age: 18 Birthdate: 11/26/55 |
| Medications: Penicillamine, Ainc Acetate (Galzin) | |
| How My Wilson's Disease was Discovered | |
| When I was 36, I went to an ophthalmologist for an eye infection and he discovered my Kaiser-Fleischer Rings. At the time, I was having no symptoms of Wilson's Disease, however, when I was 18, I had a very severe case of hepatitis. I swelled up with fluid so the doctor was unable to perform a liver biopsy. I was treated with prednisone and after about a year recovered. I subsequently had three different liver biopsies (one during the removal of my gall bladder). Apparently, none of the doctors were looking for copper! During the years between 18 and 36, I also had difficulty becoming pregnant and then suffered four miscarriages. I think this was related to the Wilson's Disease. |
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| My Symptoms Before Treatment | |
| I was experiencing no symptoms of WD when I was actually diagnosed. | |
| My Symptoms Now | |
| After being put on a large dose of penicillamine for treatment of the WD, I developed a severe cough and was diagnosed with Asthma. I lost all sense of taste and could only stand to eat soda crackers and celery. I lost 30 pounds very quickly. My urine tests were showing severe side effects from the penicillamine so my doctor took me off completely and was going to try Trientine. I switched doctors at that time and was started back on Penicillamine at a very low dosage which was gradually increased. I eventually recovered my sense of taste but did not gain much of the lost weight back. | |
| Additional Comments | |
| I feel very lucky that I survived what could have been a fatal hepatitis when I was 18 and that since that time, the symptoms I have had are minor compared with what other WD patients have suffered. I have a sister who had a liver transplant 12 years ago, but strangely enough was never diagnosed with Wilson's Disease. I would like to encourage everyone to take charge of your health and when you feel that treatment should be better or different, make that clear to your physician or find another who will listen and respond to your needs. Each person knows best when something is not quite right with your body. I work in the medical field and I know that sometimes the business of medicine takes over the humanity. Care about yourself! | |
| Contact Info | |
| Nicki Karst (karstkl@srv.net) 1970 East 17th St., #104 Idaho Falls, ID 83402 USA fax: 208-542-2501 |
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