Well, my story goes, I have been having twitches in my head/arms since freshman year of high school (A freshman in collage now). I just ignored them at first, people gave me weird looks, but it didn't bother me enough to get it checked out. Finally one of my friends suggested I go to the doctor, and after much dragging my feet, I did. I did some research in to tourettes, and I saw a lot of the symptoms in me, and went to the doctor expecting to be diagnosed with tourettes, or just told to lay of the caffeine. After an examination the doctor tells me, that she thinks it could be wilson's disease, and wants me to come back in a month. So i figured (foolishly) that it gives me twitches, so what? Why waste the money on another blood test. I put it off for a year, today I finally rescheduled an appointment, after actually looking into the disease a little bit.
Does anyone have any advice for a guy like me going into this?
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Im the process of being diagnosed.
- By Chubz64
- Posted April 21, 2009 at 3:53 am · 5 replies
- In Getting a diagnosis
- Shared with the public
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- By RajeshKumar
- Posted April 22, 2009 at 12:55 am
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HI,
Don't fret too much about the valuable time you have lost,it will not help.Do have all the lab tests that you doctor orders immediately and follow the medicine regime strickly.The lab test may be liver profile, 24hr urine for copper & CP.DO give us a feedback to the tests & their results.This a good site to address your fears & and to get a good understanding of wilson from people who are living with it.This is a very treatable disease.
Take care,
Rajesh.
- By Chubz64
- Posted April 22, 2009 at 1:43 am
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Hey, thanks so such Rajesh. The lost time is something I have been worrying about. Because from what I've read, if untreated to long, it will be fatal. Is this true? If so, how much time is to long?
- By esther2k5
- Posted April 22, 2009 at 5:12 am
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Yes wd is fatal if untreated but it varies greatly with each individual and can take years depending on the extent of copper damage to the liver and brain--if the lab tests confirm that you have wd you will need to start taking one of the approved drugs for wilson's.
Syprine is now considered the treatment of choice for initial decoppering. You will need to take medication for the rest of your life but wd is one of the few genetic diseases that is so very treatable as Rajesh noted. I was diagnosed in my twenties and am doing great in my fifties and many others live extremely well with wd.
Arm flapping is one of the neurological symptoms of wd. Please keep us posted on getting a proper diagnosis.
Esther
- By Chubz64
- Posted April 23, 2009 at 2:43 am
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I would like to thank all of you guys for answering my questions. I kinda expected some people to half way care coming into this, and expected to get yelled at for my lack of knowledge about any of this. I am really thankful that you guys are nice enough to explain things to me, and help me out.
Just to let everyone know, I'm going in Saturday to the doctor's office, hopefully we'll make some headway with my diagnosis.
- By guds
- Posted April 24, 2009 at 1:23 am
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My friend too is waiting for the report and doctors visit.. good luck.
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