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Nancy H. Tobey - symptomatic
Onset of symptoms: age: 15 Birthdate: 12/16/53 |
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Medications: Penicillamine, Zinc Acetate (Galzin) |
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| How My Wilson's Disease was Discovered | |
| When I was 15 years old and a freshman in High School, I became very depressed and could only think about death, not my own but that of my parents. I would look at them and start to cry. My parents and teachers thought I was doing too much school work so they made me take a week off without any books. I only became more depressed. So my mom brought me to a Dr.who asked me some questions about school and decided I was having an "adolescent adjustment reaction," put me on Valium and left it at that. Well I continued to get worse so mom and dad brought me to another doctor who at least did a physical and blood work. The blood work showed a very low platelet and white cell count and my liver functions were extremely high so this dr. admitted me to the hospital for further testing. After many xrays, blood work galore, a bone marrow biopsy and a scan of anything that could be scanned, it was decided that my spleen was extremely enlarged and needed to be removed. I! was schedualed for a splenectomy as soon as they could build up my platellet count. Well I had the surgery and an open liver biopsy done at that time revealed a most chirrotic liver. I also had a blood sugar of 395 which is very high so I was put on insulin and never retested. I kept going into insukin shock because I wasn't a Diabetic and did not need the insulin. I was finally retested by another more caring doctor who discovered I wasn't a diabetic and didn't need insulin at all. I did fairly well until the middle of my Junior year in High School at which time I would bruise easily, and when I cut myself it would take a long time to stop bleeding. I had to stop dancing lessons because I was falling too much. I couldn't walk in a straight line, it became an effort for me to write and even I couldn't read it, my speech became slurred, I would drool and could not control it no matter how hard I tried. I had a hard time keeping up with my school work although I had been a! n Honor student my whole life, I could no longer ice-skate,! ski, dance, ride bikes or even walk. I began to have tremors in my arms, my head and legs would jerk uncontrollably. Some of my teachers stood behind me and supported me , but others accused me of being a drug addict and even an alcoholic. My parents were very woried. My mom would cry all the time, I heard her one night say to my father "Bill, Nancy is dying right in front of us and there is nothing we can do about it!" The nnext day mom and dad brought me to Cutler Army Hospital in Massachusetts. All I did was say hi to the doctor and he said "Her tonsils have to come out!" Well I had the surgery and because of my cirrhotic liver I did not "completely" wake up from the anesthesia for 3 days and I lost six units of blood and I became jaundiced. A doctor, Dr. Samuel Rosenthal was consulted to run tests to find out why I had so much trouble with a simple tonsillectomy. Well after much research, many consultations, more blood work Dr. Rosenthal diagnosed my Wilson's with the presence of Kayser-Fleischer Rings which could and still can be seen with the naked eye. I was so happy to be able to blame my problems on a disease because even I was beginning to think that I had broughtr on the problems myself because so maaany teachers and doctors had told me that!!! | |
| My Symptoms Before Treatment | |
| My initial symptoms were severe depression. Then slurred speech, illegible handwriting, drooling, uncoordination tremors, unexplained bruising and bleeding, my extremeties became rigid, joint and muscle pain which has progressively become much worse over ythe years to the point of requiring narcotic pain medication to ease it a little and jaundice and abnormal liver functions. | |
| My Symptoms Now | |
| Tremors, uncoordinated, slurred speech when tired and SEVERE JOINT AND MUSCLE PAIN. Galzin-Caused my liver functions to become abnormal, supposed to be transient but still after 1 year have not returned to normal and caused me to have a bleeding ulcer. Penacillamine-caused a transient rash and have caused some kidney problems | |
| Additional Comments | |
| Contact Info | |
| I love to cross country ski with my family and despite the fact I have had bilateral knee replacements I still do ski but to a minimum.
I am a Registered Nurse Working only very part time due to being disabled and ooold!!!
I like to sew, read, cook and make crafts. Wilson's disease is not a death sentence, yes it can get you down once in a while but that's OK. Don't dwell on your problems, think how lucky you are to be living. And you have all of us who truely do understand. TAKE YOUR MEDS AND DON"T GIVE UP!!! |
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| Contact Info | |
| Nancy H. Tobey LLJL99A@prodigy.com 599B Boston Road Billerica, Massachusetts 01821 U.S.A. tel: 978-667-8105 |
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