Hi! My name is Margus. I´m 26 year old guy from Estonia. I have a fiancee and no kids yet.
So looks like I have it. I found out the lab results for the blood and the 24h urine test. Urine test showed 3.7. Doc said that this value should be around 0.32. The blood showed the same kind of imbalance. I Dont know my liver biopsy date yet.
honestly, I´m scared. I have read a lot about this thing by now and its not good.
Few things are still unclear about this disease so if anybody knows any answers to following questions please feel free to jump in:
1. Do all patients who start the decoppering develop neurological symptoms. If not, then how many out of ten for example. Is this percentage different when treated with peniccillamine or trientine?
2. If it`s going to get worse after the start of the treatment, then how fast? what are the first signs?
3. What is the actual chance that I will get some permanent damage(neurological) from the treatment.
4. How fast does it get worse without a treatment? The waiting between doctor appointments(really long queues) is killing me. I dont have any symptoms yet other than some pain in the liver area(blood tests also showed liver issues) and some very mild twitching of the arms and legs(maybe not a symptom at all?) and some anxiety sometimes.
5. Trientine is not a registered medicine in estonia. So I think my doc would probably want to go with penicillamine. Should I try to make her treat me with trientine? If yes then can you give me some hard facts that would help to explain her about trientine. Some studies maybe, or some opinions from the experts.
6.Why me? :)
have to go now but talk to you later.
thanks in advance to everybody!
Margus
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doc told me the news today
- By Margus
- Posted November 10, 2008 at 11:33 am · 28 replies
- In Newly diagnosed
- Shared with the public
Explore topics in this discussion:
Wilson disease Fatty liver Anxiety Pain Weakness Cuprimine Liver transplant Penicillamine Stress
28 replies
- Oldest first
- Newest first
- By Margus
- Posted February 9, 2009 at 2:53 pm
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Hello all,
My head MRI showed no copper in brain. so there is no copper in my liver and brain.
Still waiting for those gene results but its very unlikely that i have wilsons.
I still feel weakness in my left hand, but it has to be caused by something else than wilsons.
I also have some liverdamage and i am getting long term treatment for that.
This is my last post here. I wish u all the best and I hope that you dont let your fear get out of proportion like i did :P
Bye all
Margus
Estonia
- By Margus
- Posted December 21, 2008 at 6:56 am
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yep, thats where it started with me. elevated liver blood test results...
m.
- By Rose5
- Posted December 20, 2008 at 9:14 pm
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I am glad to hear that you are well Mel
I always thought that WD would always have elevated liver blood tests and thats where it always starts??
Where it shows as a symptom in the patient is a different story - as in neurologically - and thats when the patient goes for tests only to find out they have elevated liver..
has anyone not had elevated liver that was diagnosed with WD??
I am curious..
thanks
Rose
xx
- By mel9300
- Posted December 18, 2008 at 3:45 pm
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Wilson's disease is unique in every patient. The copper does not have to just store in your liver. It can store in many different organs. It is the one that choses. In my case, the copper ONLY stored in my liver. It was 80% dead by the time I was 9 when I was diagnosed. I had the KF rings in my eyes and that was it. I never had any neurological problems. No copper was found anywhere else. So in your case, nothing stored in your liver, there might be some in your brain, etc. I was on penicillamine and zinc for years and never had any issues. So any treatment now is good. The doctors will watch your reactions and change it if needed. Just remember, having WD is not the end of the world. It is very treatable, even in the extreme cases that cause transplants (like mine), life continues.
Good luck, keep us updated.
- By Margus
- Posted December 16, 2008 at 7:46 am
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no conclusion. she will treat me for the fat in my liver, but thats not the worst disease to have so im not really worried about that.
she obviously is not sure aswell why my copper levels are so high so she ordered the eye exam and neurologist appointment. she actually said that neurologist will check if there is any copper in my brain...
I think i will have the results from the gene analysis in couple of weeks... that should clear things up...
- By Rose5
- Posted December 16, 2008 at 6:11 am
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Hmm I am not sure Margus - if you dont have copper in your liver then you dont have WD
What was their conclusion? Fatty liver?
keep us posted
Rose
x
- By Margus
- Posted December 16, 2008 at 4:55 am
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Liver biopsy came back NEGATIVE for copper!
what the hell!?
they found some other stuff though. turns out i have too much fat in my liver. im not overweight. but thats basically good news.
She sent me to the neurologist to find out if there is copper in my brain... and why my fingers sometimes have difficulties obeying my orders. that appointment is 2 weeks away.
how is that possible, that my urine and blood serum copper is waaay too high and there is no copper in the liver ???
- By Margus
- Posted December 6, 2008 at 7:10 am
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no, eye doc wasn´t there that day. It doesn´t matter much i guess with biopsy and gene results coming in...
c u
Margus
- By Rose5
- Posted December 6, 2008 at 5:43 am
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well I am glad to hear you got your families support through all this Margus..
Did they end up doing the eye test as well as your liver biopsy ?
I really dont understand some doctors......
Good luck
Rose
x
- By Margus
- Posted December 5, 2008 at 7:14 am
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hi!
they said that because the treatment is very serious they have to be very sure before starting the treatment.
I guess they are not sure enough.
I also got done a gene analysis through another doc who I know. No idea when I get the answer from there. thats probably a couple of weeks away atleast.
margus.
- By Rose5
- Posted December 5, 2008 at 6:47 am
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Hmm I am surprised they havent started you on anything either Margus - a biopsy only shows there is copper there and how much you have in overload..
Are they not sure if you got WD?
What reason have they given you that they are waiting?
When Lauren was diagnosed, she was started on meds the next day..
Rose
- By esther2k5
- Posted December 5, 2008 at 4:50 am
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I hope your doctor starts you on something on the 15th when you next see her. Personally, I find it shocking and reprehensible that the doctors you've consulted have not started you on any treatment and I think you need to demand that you receive medication for wilson's or find another doctor who will start you on penicillamine immediately.
In the US any doctor who diagnoses someone with wilson's would, immediately, start them on penicillamine or trientine. I hope it won't be much longer that you have to wait for treatment. It's good that you told your parents so they can be supportive of you during this time.
- By Margus
- Posted December 4, 2008 at 6:57 am
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Hi!
I´m not taking anything right now. I tried to tell my doc about starting me on something, but she didnt want to hear about it at all. So I contacted another doc who is supposedly the best doc in estonia (regarding WD) and she also said that lets first wait for the biopsy results. so thats 2 doctors against me.
The liver biopsy was done 2 days ago. I will go back to the doctor on the 15. of dec.
I´ve been feeling guite good for the past week and a half. Coincidentally week and a half ago i told my family about whats going on with me. That took away a great amount of fear and i guess thats why i feel better.
so overall i think so far so good. 11 days to go.
talk to you soon!
Margus
- By Summicron2
- Posted December 4, 2008 at 4:50 am
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"I´m getting some neurological symptoms"
How many doses (in mg) do you take ?
Be careful : too much peniccillamine (trolovol in Europe) could be dangerous.
- By sismeliss
- Posted December 2, 2008 at 4:07 pm
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I agree, please push your doctor to get you on something. My son went from showing no symptoms to getting a liver transplant in 3 months time....things can happen quickly and you need to start ridding yourself of that copper as soon as you can.
Best of luck to you!!!!
- By esther2k5
- Posted December 2, 2008 at 6:36 am
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I don't know why your doctor hasn't started you on treatment with penicillamine or at least zinc--the blood work has already shown that you have wilson's and the liver biopsy is only additional confirmation.
You need to be on one of the approved meds for wilson's and penicillamine will only help you get rid of the copper overload.
- By Margus
- Posted November 22, 2008 at 8:10 am
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I´m getting some neurological symptoms. First I tought I´m making this up because of all the fear and stuff, but now I think these are real symptoms. I´m weak. Sometimes to the point where my legs are shaking a bit. Also I have noticed a strange weak feeling in my left hand and this morning first time in both hands. The movement of the hands wasnt fluid and I had to consentrate to get stuff done. I also get anxiety attacks and its hard to fall asleep.
So I´m gonna call my doctor on monday and tell her about it. Maybe she can bring the biopsy date closer somehow.
I´m thinking of asking her to start treatment straight away. I mean how much damage can penicillamine do in 3 weeks if the liver biopsy would come back negative for copper. I bet the damage is smaller than waiting 3 weeks with the treatment would do. Or even start with the small dosage or something because if it keeps getting worse at the same rate then... I dont even want to think about that.
its very scary :(
any comments and advice is very welcome.
Margus.
- By Margus
- Posted November 18, 2008 at 7:47 am
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So, some news. Liver biopsy date: 02.12. The eyes will be checked around that time aswell. Then back to the doctor at 15.12 and then we can start the treatment.
Asked about trientine. She said that all patients that she or her colleges in that hospital had(3 or 4 wilson cases) were put on peniccillamine with no problems. And she saw no reason to change that. So i guess I will try peniccillamine... also because its well available in estonia.
one month to go... hang in there my liver/brain, the help is on the way.
margus.
- By jeanne4
- Posted November 15, 2008 at 11:56 am
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Margus, try not to worry about having wd. It's very treatable. I was diagnosed with it at age 19, have been on penicillamine for 13 years, then on trientine for 16 years, then galzin for 6 months, then over-the-counter zinc for the past 7 years. I think the math is a bit off, because I'm actually 57 now-- but anyhow-- you got the idea. I had liver failure when I was diagnosed and never developed any real long-lasting neurological symptoms-- only some minor drooling onto my pillow at night for a brief period of time. Since the diagnosis, I finished college and got 2 masters degrees. You will be fine, too.
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