I am 32 years old and have been diagnosed with Wilson's since I was 15. I was diagnosed after a liver biopsy during hospitilization from acute liver failure. I was treated with Penicillamine and responded well. When I was 20 I switched to Trientine.
My life collapsed the year I turned 26. I had been told I would never suffer from brain complications. How easily we learn that most doctors are very uneducated when it comes to Wilson's. It started with not being able to use my arms well. From month to month, week to week it progressed. I couldn't use my hands, I started slurring, I couldn't see anything up close, I started having absence seizures, I began to lose my balance.
After being told I was going to die, my current boyfriend and I decided to get married immediately while I could still walk. He is the love of my life and he sacrificed so much for me. He dressed me, fed me, did all the shopping and the cleaning. I deteriorated. In December of 2001 I was seeing doctors (6 of them) 3 times a week, on 15 different medications, and still worsening. I went on disability.
That February I developed hypermania. I was diagnosed with bipolar but had no depression. I was so manic I hallucinated. I was in physical therapy and speech therapy. (To ANYONE with speech problems, I recommend speech therapy. It is the most frustrating thing to learn to speak again, but it is so rewarding when you can again.) I regained my balance and my seizures lessened. I was on a coctail of 15-19 different meds for 3 years. Over this time I got better slowly.
Here is my WARNING:
The doctors never lessened my medications. Even though I got better, my tolerance to them increased. I even became addicted to some of them. When you have 6 doctors and none of them want to touch each other's prescriptions, the tangle of over medication is dangerous, for me it was near fatal. In February of this year I started hallucinating voices - for the first time. I was admitted to the hospital ER. I was transferred to ICU where I thought the whole hospital was trying to kill me. When they transferred me to the Psych ICU, they lost my medication list. Little did I know this would save my life. I was unconscious for 3 days, seizing and going in and out of a coma. When they finally learned that they had withdrawn me cold turkey off of everything, they added back SOME of the meds. I became conscious again that day. When released, my doctors realized how dreadfully overmedicated I had been. We began the systematic process of safely weaning me off of all my medications. It took six months to do it, but today I am MED FREE!!!!!! I am only taking Zinc and Zyrtec for allergies. I haven't felt this good since I was very yound.
Here's for the Miracle: I am pregnant! I can finally have a child and know it is safe from the tetrogenic effects of all that, well, crap. I want to provide you with hope. If I can get better, so can you. Find a specialist. Have ONE doctor coordinating all your meds. My single wish for each and every one of you is a life free from the 4-tiered pill box. If this helps anyone please tell me. I feel I have been saved for a reason and I believe it is to provide hope.
All the best to you and your loved ones.




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