From the beginning till now

December 2006:
- My colleagues have said that i had changed in my behaviour.

Spring 2007:
- Able to walk, but only at one speed
- Difficulties with orientation
- Tired most of the time

Summer 2007:
- Less control over muscles
- Other symptoms worsened

My boyfriend and I thought that i maybe had Lyme disease.

After summer 2007 i went to the neurologist for these symptoms. They made an MRI scan of my brain. After a week they came with the results. The scan showed some white places in my brain on both sides. Left as well as right. In a symetric way. After some tests of blood, urine and fluid from bone marrow they diagnosed me for Wilson Disease.

Went to an Academic hospital in Amsterdam. Stayed there for a week weeks. They started with zinc treatement. Zinc acetate (Wilzin). Three times 50 mg a day. After a few days i wasn't unable to walk on my own any more. All my symptoms worsened a bit.

Now we are in may 2008 and i still have treatement with Zinc. Nothing changed actually. Soon we are going to start with an extra medicine. A treatment of Trientine for 4 months with zinc as well. Hopefully this will help.

Symptoms at the moment:
- unable to walk by myself
- unable to write
- unable to be alone actually
- tremors in arms and legs
- trouble with swallowing
- drooling a lot
- loosing weight

By lindy
Posted May 19, 2008 at 6:50 am
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Hi Casca,
my sister has severe neurological wilsons, she has all of the same symptoms as you plus more.
you should have been put on the trientine as soon as you were diagnosed as the trintine pulls the copper out of your body , the zinc only stops any more copper from entering your body and will not pull the copper out . be careful that they DO NOT try to get the copper out of you too quickly as this can cause you to get worse quite rapidly and cause some permanent damage ,as was the case with cath.
Please make sure you take your meds as you should, both the trientine and zinc should be taken at least an hour away from food otherwise they will not do their job properly and NEVER skip or stop taking your meds as this will cause you to become much worse and can even be fatal.
i hope i am not scaring you by saying this but watching cath go through what she is and losing a brother to this horrible disease i do not want anyone else to suffer as they have.
as for your symptoms the tremors will get better as you do, are you getting any physical therapy? this is important to keep your muscles moving.
cath is on Artane for her drooling which seems to help and this should also get better with time. in fact all of the symptoms you have should go away once you are on the proper course of treatment, the drs in america, who in my eyes are the best in the world, say that it usually takes about 2 yrs to get better so you just have to be patient and you will get there:)
where are you? have you got drs who know what thay are doing? alot of drs think they know what they are doing but in fact dont know much at all. dont be afraid to ask questions and you are well within your right to get answers.
this is a great place to get advice as there are some very knowledgeable people on here who are always willing to help, there is also another very good forum associated with the wda that i use , well lately been doing more reading than writing, can send you the link for that one too if you like.
well think i have rambled on enough for now, please keep us informed on how you are going.
you are in my thoughts and prayers, and remember you will get better.
Best Wishes
Melinda

By Amy4
Posted May 19, 2008 at 2:50 pm
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Hey Casca,
My son was diagnosed July 2007. He has had the very same symptoms and worsening as you. He can not walk on his own, or swallow or speak. He has a feeding tube as well. He has been on treatment since August. He is in speech, occupational and physical therapy. We have high hopes for recovery. His numbers have gone from 225 to 56 in urine copper test. The brain does take much longer to heal. He also has cirrosis. Stay strong. Take your meds faithfully. God is bigger!

Amy (Clay's Mom)

By lindy
Posted May 20, 2008 at 7:17 am
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Hi Amy,
long time no hear, have been wondering how clay and your family are doing.hope things are going ok for you!
you are a very special person and everyone here thats gets your advice and guidance will be so much better off because of it.
take care
Melinda x

By Summicron2
Posted May 24, 2008 at 3:20 pm
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Hi all, from Nancy in France,

Our son, Guillaume, 22 years old now, has had the Wilson's disease since march 2006.

He is still in a bed, fed with a feeding tube, speechless. But now, copper has been evicted from his body (as Amy4's son). And his limbs start to move again.

@Casca:you need absolutely and quickly trientine !

It's possible that the treatment deteriorates temporary your health, as it is the case for Amy4's son and for Guillaume.

But you need to "pisser votre cuivre" (= "to pee your copper") -pardon me if it's crude-.

Nursing is very important too: be careful with infection !

Best wishes,

Dominique

By Amy4
Posted May 26, 2008 at 12:23 am
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Casca, I hope you are finding help, and Nancy is right about needing to be on Trientine and Zinc to stop and remove excess copper. The disease can be treated. The effects have to be dealt with and takes time to overcome. Lindy, how is your sister? Is she taking anything besides artane? Clay is on Artane and Baclofen for the dystonia. He has an amazing attitude to have been striped of everything. He just knows he's going to recover what he has lost. It is slow going, no definite improvements, but he is stronger with therapy and being given the tools to use when things kick in again. Nancy, how long has your son, Guillaume been taking trientine? Is he on any other meds? Does he have dystonia from the neurologic damage? How long has he had a feeding tube? Clay has had one since Dec. 18. He has trouble coordinating swallowing, moving his tongue to clear his saliva. He is completely, mentally the same, but since he doesn't speak, it's hard for others to know this. He communicates with a letter board, pointing out each letter of the word. Frustrating sometimes. My email is akc_n_nc@hotmail.com. This site is so helpful Casca and wilsonsdisease.org has so much info.Hang in there!

By McVeggie
Posted May 28, 2008 at 12:50 am
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Casca,
When I first got diagnose, I had all the symptoms you have when you got diagnose plus the ring in my eyes and depression. My doctor starts me on 1000 mg cuprimine. I had to be hospitalized for one week when I first got on the treatment because the symptoms got worst I was falling flat on the ground wasn't able to do pretty much everything. Lost like 30lbs in that single week as well. But I got better after that slowly all the symptoms improved as I continue taking my meds. Gain back about 20lbs of my weight at highest point. My weight goes up and down a little now depending on how stress or depress I am. After a year or so I have complain to my doctor that the nauseate in the stomache is making me ill. My doctor reduce my med to 750 mg. Been on 750 mg of cuprimine ever since until recently I asked my doctor to give me Galzin. So right now I am on 25 mg of Galzin and 500 mg of cuprimine. Seems to be doing alright now.

By Summicron2
Posted May 28, 2008 at 9:03 am
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Hi all,

@Amy4

"Nancy, how long has your son, Guillaume been taking trientine? Is he on any other meds? Does he have dystonia from the neurologic damage? How long has he had a feeding tube? "

""""""""""
RE:

Guillaume has been under trientine since the beginning of the disease (i.e. : march 2006)

Other med : baclofene.

Dystonia has disappeared now.

Feeding tube since june 2006 :-(

Best, and hold out against that bloody disease !

Dominique

(We live in France in a town called Nancy in a state called Lorraine. Yes : Nancy and Lorraine are/were first names in USA because of the WW1: many US soldiers were near here).

By Amy4
Posted May 28, 2008 at 10:04 am
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Hey Dominique,

How long has your son not had speech? Do you feel he will remove the feeding tube soon. Where did he have the Dystonia? Clay has generalized and Cervical, his head pulls to the left. How do you care for your son. It's a struggle everyday, looking to the next day. But, like you said, we have to beat this. And we will! My e-mail is akc_n_nc@hotmail.com. As a mother it's so hard to watch. I feel rather helpless sometimes. Thank you for the encouragement of someone who's been hanging in there. Clay was diagnosed in Aug. 2007. Thanks again

By Heron
Posted May 29, 2008 at 8:55 pm
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Hi Casca,
How are you feeling? Are things any better? It would be good to hear from you. I have WD, was not diagnosed until I was 53. I took trientine and zinc, then just zinc and I'm doing well. It's such a mysterious disease! But hopefully if you can get the right doctor and meds you will slowly get better.

Ann

By Summicron2
Posted May 30, 2008 at 9:11 am
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Hi Amy4,

"How long has your son not had speech? "

RE: 2 years.

"Do you feel he will remove the feeding tube soon. "

RE: no. Guillaume has trouble swallowing

"Where did he have the Dystonia? "

RE: from march 2006 to dec 2006

"Clay has generalized and Cervical, his head pulls to the left."

RE: Guillaume too. It's a syndrom with the name of a doctor, but i forgot the name !

"How do you care for your son"

RE: Guillaume has been in hospital for 1 year. Since dec 2006, he has been at home with my wife who looks after him night and day...We are in a health network called SIAD (something like "home help" ).

It seems that your son Clay has the same neurological symptoms.

Take heart ! There is a french woman who was in the same state and she recovered completely after 3 years.

Best,

Dominique

By Casca
Posted May 31, 2008 at 9:43 am
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Dear Melinda,

Thank you for your reaction. My doctors started with zinc because they wanted to do the treatment very carefully. I know that Zinc only stops more copper.

The vision of my doctor was that your body needs copper +/- 2mg a day. When you stop with more copper from entering your body, your body will get the copper from where it is stored. The brain in my case. That's what we were trying to do in the first six months after when i was diagnosed.

What i'm trying to say is that my doctor is very carefull, maybe a bit to carefull. I will be treated with Trientine for 4 months. He want to give me Trientine instead of Penicillamine because of the side effects. I will stay in the hospital for 3 or 4 weeks. Still waiting for this med.

I live in Holland. Close to Amsterdam. Do you have Wilson too? Thanks again for your story. Could you please send me the link of the other website.

Best wishes,
Cassandra

By Casca
Posted June 8, 2008 at 6:42 am
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Hi Amy,

How is your son Clay at the moment? I'm still waiting for Trientine. I've had some problems with eating as well. It was so difficult to eat when i was sitting at the table. I eat best when i'm lying down. By the way, my boyfriend is typing my messages. Hopefully i will get my Trientine soon.

I hope Clay gets better.

Greetings,
Casca

By Casca
Posted June 16, 2008 at 3:22 pm
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Hi everyone,

I will be in the hospital for 3 or 4 weeks starting next wednesday. At last my treatment with Trientine will start. They are planning to give me Trientine for 4 months or so.

Talk to you soon. I'm so happy that i can read so many stories about this disease. There are so many hopefull things. I hope, i will be better soon. Take care everyone. Talk to you soon.

Casca

By Casca
Posted July 12, 2008 at 5:12 am
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Hello everybody,

just got back from the hospital for the weekend. Using Trientine for two weeks now. Nothing changed yet.

The 24 urine test showed more copper so that's a good thing.

Thank you all for your kind reactions. We are here to help eachother.

Welcome to Inspire!

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