Hello to all: I was diagnosed with WD last week and I'm so depressed. I also have severe gastro paresis and have a pacemaker implanted to work my stomach that has no peristolic movement. My question is this, My copper levels have been rising for over a year, but not one of my doctors checked for WD. It my was optomitrist who clearly saw the copper rings in my eyes, along with bloodwork. How much damage can be done in a year to my liver and kidneys? Does it take years or can it happen in weeks or months. I have a biopsy scheduled but I'm really depressed that after managing the gastro paresis, I have this terrible disease. Can a liver or kidney become diseased quickly or does it take years? I hope there is a real person out there.
jas
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new to group, info please
- By jas
- Posted November 2, 2008 at 4:19 pm · 6 replies
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- By MamieJ
- Posted November 2, 2008 at 9:18 pm
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You are not alone. I was diagnosed with WD about five years ago. I am know expert on it but I do know that I am living a decent life. I take meds daily and have had know major problems. I know it is scary and upsetting to realize that you have this but just reach out to others for help. When I was told that I had it I was so down. But I am glad that they did find out what was wrong with me because my first doctor did nothing at all. So for several years my liver enzymes were really elevated and nothing was done. I hope these words help some. Keep your chin up!
- By pedsrn9999
- Posted November 3, 2008 at 9:29 am
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Hi..
You didn't say how old you were but WD is there from birth and you've been accumulating copper from that time. As for the damage to the organs, it appears to be highly variable from what I've seen on this list. My 21 year old son had no symptoms until August 11th of this year when he suddenly became jaundiced. He went into acute liver failure and required a liver transplant on Oct 14th. I've spoken to many people with WD who have had it for years and haven't had the same experience as my son. Many are doing well on medications. So, I guess what I'm trying to say is that each person's experience with WD is different.
Good for your optomotrist for recognizing that you had WD. He did you a favor.
Shirley
- By jas
- Posted November 3, 2008 at 9:29 am
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Thanks for writing back, now at least I know I'm not alone. But I am worried.
thanks for writing,
jas
- By jas
- Posted November 3, 2008 at 9:39 am
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Hello to all: I'm 55 and I have severe gastro paresis with a pacemaker to keep my stomach pumping and have to give myself 4 shots a day to help digestion in my intestines. I get mal nourished easily although I'm not thin and I don't know how much more I can handle. And now this. My optometrist saw the rings in my eyes, but until now, my docs have ignored my high ..very high copper counts. I will see another WD doc this week sometime. my primary care is setting it up. I'll pray for good results. Thanks for the reply. being in a group totally helps. I have to ask a negative question...do people die from this?
jas
- By esther2k5
- Posted November 11, 2008 at 8:29 pm
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Welcome! Your case shows how variable the onset of wilson's disease symptoms is; symptoms can show up from early childhood to one's fifties as in your case.
I was diagnosed in my twenties and am now 53 and to answer your question: yes, people do die of wilson's but not often anymore since there are a number of effective treatment options but compliance with taking decoppering medication is essential! Wilson's is fatal if it goes untreated too long but I pray that you have been diagnosed in time and that your symptoms can be halted and eventually reversed. Has your doctor started you on syprine (trientine)? It is best as the initial decoppering agent.
- By Gerard_A
- Posted November 13, 2008 at 9:19 am
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Hsello Jas,
I am not a doctor, but I am sure you got WD, because you got copper rings in your eyes. (Ring of Kaiser Fleisscher). The problem know is to find a doctor who will threat you and soon. It will take a few years to threat your liver and kidneys. I hope it isn't too late.
You could die by a coppered liver. The only solution is a livertransplant.
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