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I was told I have WD 6 months ago. My doctor is ordering for me to do bloods work and 24 urine every 2 week. Isn't that a little too much? How much are u doing?
I wouldn’t mind them if I don't have to get poke with the needle more than once 99% of the time. Oh and the 2hour wait.
Please reply if u have something to share
hi
I am sure that you must be very angry to see your blood taken and urine every two weeks. It is normal to do so because the Docs wants to see the evects of the medicine and the progress of your WD. As WD is not known very much the doctors them selves are some times are not sure. WD affects differently to different people. Spectrum of WD is so wide that no one can tell exactly how will it affect one. So I assume that your doc must be making sure about your disease. You say that you were told six months ago that you have WD. I don't know what medication are u on. besides this you can get more information on WD on Wilsondisease.org. If you telll your doc to see the web site He may be able learn more about your WD. Hope you get your treatment sorted. and don't worry obout the testing as you will get use to it. Best of luck
mic,
ha you only have two hour wait that is nothing, when i was first diagnosed with it I had to wait for the whole morning just to go see my doctor. I will be in the hospital from 8 am in the morning and get out around 1ish pm in the afternoon. I liked my doctor then though just too much waiting. I change my doctor for sometimes now. however, I am not happy with my current doctor. I am thinking of going to Yale Uni. to look for that WD specialist to have a complete check out by him and have him prescribe me something else other then cuprimine. anyway best of luck!
oh, the two hours is just for the lab work i have to do every two week. When the doctors were trying to confirm things and get things sorted the time i spent waiting was terrible. I was in hospital for a month, waited a week and a half to get a MRI done, they took 4-8 tubes of blood from me everyday. After my stay in the hospital it was no good either, i has appointments here and there. my dad kept taking time off work that he got fire in jan 2008, but luckly he found another job in march 2008.
haha guess I was lucky then the 6 to 8 tube of blood was taken out by my doctor himself. I did that once every 3 months for about 1 year then every 6 months for about 3 years. I had my brain MRI scan once every year for about 3 years. Now, my doctor only take 3 tube the max out of me. And yeah my mom had to quit her job for approximate a year just to take me to hospital appointments. I stayed at the hospital for around 2 1/2 weeks due to reaction to the cuprimine that's Penicillamine.
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