doc told me the news today

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

By Rose5
Posted November 11, 2008 at 5:31 am
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Hi Margus and welcome to the community :)

I dont have WD but my daughter does and she was diagnosed November 2007.

Dont be alarmed as my daughter is doing fine :)

From what i can understand from your reply, you dont have alot of symptoms and thats a good thing, but getting on the chelator as soon as possible is a good thing. I would try to get the trientine in if I could as it is alot safer in the long run. I am in Australia and its hard to get Trientine here, but I got it in for my daughter - it is all a cost thing for them - but its our lives and we should be entitled to the right treatment if its out there :) well thats how I think ..

Its good to learn as much as you can with this disease as you will find alot of the time you will be your own advocate..

I will try to answer your qs but remember, everyone reacts differently so I can only answer with what i saw with my daughter..
1. usually the first 6wks you get abit worse before you get better as the copper starts to flow out..
2. depends on the patient - daughter got a few tremors..
3. well you sound like you are doing well - you could even start on zinc while you wait..
4. its up to you with the penecillamine - do some homework and see what you think - I didnt want my daughter near the thing..
5. we went through the why me stage and occasionally still do - but then I thankGod that this disease is treatable and can be managed. As long as stay on track checking tests etc.. you will be fine :)

Stay safe and take care

Rose
x

By esther2k5
Posted November 12, 2008 at 4:48 am
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Margus, I would get started on penicillamine or zinc therapy as soon as possible if you cannot obtain trientine but here is a link that you can send your doctor about trientine:

http://www.mayoclinic.org/wilsons-disease/treatment.html

Remember that any medication you take for wilson's must be on an empty stomach--no food or drink (other than water) 2 hours after a meal or 1 hour before eating. Compliance with taking the medicine properly is essential.

You ask, "why me"? Your parents both carry the recessive gene. Mine did too. Believe me, if you have to have a genetic disease this is probably the most easily and effectively treatable one.

Keep us posted on your progress.
Esther

By Margus
Posted November 12, 2008 at 7:14 am
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Hi Esther!

Thanks for replaying! I hope my doc can read english :)
I requested information about trientine from the supplier in UK, but no answer yet.

Last night when I went to bed I felt my heart pounding really strong and there were gaps in the rhytm. Couldn´t sleep for the most of the night. So I went to the doctor in the morning and she checked me up and said that its from the nerves and stress. She said "dont worry so much". Yeah, right. Easy to say, a bit harder to do.

And Esther, when you said its probably the most easily and effectively treatable one from the genetic bunch, then that made me actually feel a lot better. Really. Thanks for that.

Buy for now!
Margus

By esther2k5
Posted November 12, 2008 at 5:15 pm
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Margus,
I hope you're not waiting for your doctor to get trientine to start treatment. It seems to me that since you've already been diagnosed with wilson's that you should be starting zinc or penicillamine as soon as possible.
I was initially decoppered with cuprimine (penicillamine) and I had no problems with it so don't worry about not having trientine if it's not available in your country. Anyway, glad I was able to relieve some of your anxiety about the disease--yes, it is a serious yet very treatable disease. I was diagnosed in my 20's and now in my 50's and doing just fine. I have been fortunate but the main thing is getting diagnosed and taking the medicine as directed and things will improve for you.
Esther

By Rose5
Posted November 13, 2008 at 8:57 pm
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I agree with Esther - start on something as soon as possible...
my daughter had to go on penecillamine for a month until the trientine arrived...
good luck

Rose
x

By Rose5
Posted November 13, 2008 at 9:40 pm
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Margus, if you get a chance, you should buy this book...

WILSONS DISEASE FOR THE PATIENT AND FAMILY by Dr George Brewer

The best money I spent and answered every question I needed as well as helped me with doctors to prove my point..

I recommend anyone just diagnosed to get it

take care all

Rose
xx

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.

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 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 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 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 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 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 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 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 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 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

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