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Come and Say 'Hello'

Rose5
0 Recommendations

Hi All x

I noticed there are a few that havent come in and said hello in the community since joining - not that you have to but we all have a story or something that is on our mind and the reason we joined this community - this is a relatively new community from what i have been told.........I am not even sure when this community opened but im glad its here

Just thought I would open a new discussion where we could all say hello (if we wanted to daily with a lil update where we are at) - how our days are going - would be nice to get to know you all xx

Hope this finds you all smiling and you are all having a fabulous weekend

Rose x

Explore topics in this discussion:

Cancer Wilson disease Brushing Pregnancy Muscle cramps Cirrhosis Edema Syprine Infertility Cuprimine Liver transplant Penicillamine Omeprazole

25 replies

Rose5

well its Good Morning here - Summer in Australia - who wants some heat hehe :)

All is going well - son and I have to do the 24hr copper urine tomorrow then the eye test during the week - by the end of this week we will know about us.........

Lauren has a day out pass today - we are going to a friends birthday - I am so looking forward to her coming back home for good :)

Have a great day

Gina001

Hi Rose and everyone. Thought I would at leat post something, so I can feel more a part of the community. I just turned 29 and was diagnosed with WD about 2 months ago after many tests trying to figure out what was causing my cirrhosis and other problems.
I live in central Pennsylvania (USA) where there are really no doctors knowledgable about WD, so I was sent to a hepatologist at Johns hopkins hospital. The doctor there is now the head doctor treating me. I am taking treintine as my treatment phase med. My doc is referring me to the transplant office to start procedures to get on the donor list. He also urges me to find out if there are any possible living donors. He doesn't know when I will need a transplant, but he is pretty sure that at some point it will be a neccessity.
My bothersonme symptoms are ascites, edema, bledding gums/nose, constantly very cold, numerous muscle cramps, and purple/brown like spots on my lower legs ( which are not uncomfortable, just ugly.)
In a couple of weeks I go in to get endoscopy to screen for varices.
My family has been very supportive. Recently the whole family pitched in and gifted me about $3000 to help pay some of my initial medical costs. My healthcare coverage isn't very good, but it is the best I can get.
My husband has also been a wonderful support and a source of encouragement.
My greatest concern right now is being able to have a baby. We want one so badly. That is how my WD was accidently discovered. We were seeing a fertility doctor and he noticed fluid in my abdomin during and ultrasound, and the rest of the tests went on from there.
I have only had hepatic symptoms. No neurological symptoms.
I think it is wonderful to have this community here. I hope to read some others' stories.
-Gina

-Melissa-

Hi Gina,

Glad you have found this site.

I was diagnosed in January 2007. I'm 25 years old (soon to be 26 in a couple months). I was diagnosed about 3 1/2 months after getting married. I got ill on my honeymoon and ended up seeing a doctor when we returned who then found out my liver enzymes were out of whack. I ended up travelling to the University of Michigan Hospital to be in Dr. Brewer's research protocol.

Who is the doctor that you're being treated by? I'm glad you're being treated with trientine. They say it generally takes 2 years to return to "normal" and to rid the body from all of the excess copper (afterall, its been building up since we were born!). You are very lucky to have found this "on accident" by seeing your fertility specialist.

You mentioned that this was found because you saw a fertility specialist? Just curious if you had either irregular cycles or stopped having cycles? That is what happend to me too. I stopped having cycles about 2 years before I was diagnosed. Turns out that WD can cause infertility. Luckily though once you're on medication for 6-12 months your cycles can return to normal (so I'm told by Dr. Brewer) and you could possibly end up being able to have children without fertility treatment. My cycles have since returned! ...and that was after being on my WD meds for 11 months! I've had 2 cycles in a row (not medication induced!)

I do want to caution you about trying to get pregnant while on the trientine in the initial 6 months after diagnosis. I think initally the dosage of Trientine is high and could maybe have effects on the baby? (I'm not totally sure on that, but you could check into that.)...also if you were to get pregnant and still have toxic levels of copper in your system that could possibly cause you to miscarry. These are just things that I have found and read through the internet. I know it really sucks having to put having a baby on hold (my husband and I had to also), but the time will fly by and you'll be on your way to getting better.

Believe me, I understand how badly you want a baby (you sound exactly how I was at first). But right now, you really need to focus on getting yourself feeling better and taken care of. If you're sick you wont be able to care for a new baby. My husband and I wanted to start our family right away and the WD diagnosis kinda threw us for a loop/detour. I, like you, felt discouraged and really really wanted to just have a baby, but eventually I realized how I needed to get better first, so that I would be able to have a successful pregnancy and even care for an infant.

Please, feel free to email me directly if you'd like to chat or have other questions / concerns: mjaffeldt@hotmail.com It can be very lonely when you're in the begining stages of diagnosis or newly diagnosed and it really does help having others (who can relate to you) to talk to.

Take care,

Melissa
(from Minnesota)

Rose5

Hi Gina x hugs x and so good to meet you - welcome to the community :)

Thanks for sharing your story - I always find it so interesting reading other peoples as I am only new to this myself (my daughter is the one with WD) and from reading everyones post - I have learnt something from each and every one...

Melissa is always full of so much knowledge - she is fabulous as are so many others in here :)

I am surprised about the liver transplant as I dont think I have run into one of them yet - Lauren (my daughter) has cirrohsis as well and I must say it is a concern to me as she does have a few liver problems......I am actually debating whether to take her in to the hospital today and she had abit of blood in her stool.....just for a check up as this hasnt been the first time that has happened........and while I am there might get a blood test and a few other things.....just to be on the safe side...

Wishing you all the best and glad to see you on the boards :)
Stay Safe and Enjoy your day xx

Rose

Gina001

((((Hugs)))) to my new community friends.
Thanks for your responses Melissa and Rose. It was really nice to receive the warm welcomes from both of you.
To answer your question Melissa- I was taking birth control until 13 months ago, during which time I was having menstral cycles. When I stopped, I never got a cycle again. Still haven't. But it is nice to hear that they can come back and that I might one day be able to get pregnant without fertility treatments. I wasn't aware of this. But my doctor at Hopkins (Dr. James Hamilton) told me that it is not safe to consider trying to get pregnant until the built up copper is removed to a safe level which he said could be a couple of years or so. And you are right, he also said it isn't safe to take trientine while pregnant. So I will just hope that one day in the future it is finaly meant to be and it will happen.
But for now, I know I need to just focus on getting healthy.
Rose- I think it is great that you are proactive with your daughter's treatment and taking the "better safe than sorry" approach. My doctor also said to watch out for blood in stool. You sound like such a wonderful and caring mother. Your daughter is lucky to have you.

Rose5

Thanks very much for the kind words Gina :)

I ended up going to the hospital today to ease my mind and I was glad I did coz I also got Laurens blood test done and her platelets have gone up all on their own :) I was so thrilled with that - thats been the first time since the day she was diagnosed - so we are progressing in a good way........

As for the blood in the stool - she had some tests and it will be analyzed but they dont seem too concerned with it all - I will see my specialist now on Jan 2nd unless they need to see me before. They also mentioned if my specialist is concerned he will put the tube down her throat - cant remember what thats called...we will talk about all that at my next visit

I also found out that Laurens liver is 969 dry weight which is the same as Jims so I think thats good news - i read most the report :) hehe

Anyways thats it from me from a happy mum for the moment -- lets hope it stays this way :)

Hugs xx Rose

George3

Hi Gina,

First of all, welcome to the wonderful world of WD.

I am glad that your family & hubby are standing behind you. That is very important.

I was diagnosed almost 42 years ago, & have been able to led a normal & productve life. I am 60 years old & retired now, & so have lots of time to play on the computer & write messages on this site.

Now, for my input. You SHOULD NOT need a liver transplant. As long as you take your meds faithfullly.

There is another site:www.wilsonsdisease.org that has a discussion group on there. There are lots of Wilson's people on there, & they will be able to answer your concerns. Rose & Melissa are GREAT sources of encouragement & also knowledge too; but this site is fairly new. There is a women, Dvora, from around Philadelpia. She sees Dr Shllsky from New York.

I know ladies with WD who have given birth to babies. There are on the other discussion group too.

It usually takes up to 2 years to get back to normal.

Best of luck to you & have a Happy New Year.

Sincerely,
George

Dvora

Hi all,

Dvora here, the woman George mentioned. I live outside of Philly. As George said (hi George), I've been seeing Dr. Michael Schilsky since I was diagnosed in 2001 (at age 41).

Schilsky did give me the name of a local Liver guy at U Penn if I needed him (haven't).

My quick history in regards to WD and babies:

I had an irregular menstrual cycle all my life. Despite that, managed to have two healthy children. (They are now 19 and 11). I didn't even know I had Wilson's when I was pregnant.

At age 41, I went to the doctor for my annual blood test for my thyroid medicine (started taking it after the first child was born). He had me take regular boold tests (for genereal health) since I hadn't had them done in a while.

For some reason, one of my liver enzymes was triple what it was supposed to be. Blood tests followed, 24-hr urine. Sure enough: high copper in blood. Oddly enough: normal ceruloplasmin levels. Eyes: no Kayser-Fleischer rings. Liver biopsy: high copper levels. So, diagnosis: presymptomatic WD.

Started taking zinc: Galzin at first; hated it. Switched to two other over-the-counter brands. Now I take Nature's Plus. Works for me. Numbers improved and are staying at levels Dr. Schilsky likes.

As to my periods, they started being cyclical! "Complained" to my friends about how women manage 12 periods a year! :) No sympathy. Now, of course, I'm perimenopausal, so the cycles are all out of whack again (and more painful), but that's an age thing. :)

Gina, and all. .. Good luck with the lowering of your copper levels. As others have pointed out, that's probably the first issue to contend with. Keep taking your meds. And once you're healthy yourself, then Nature might intervene to help with creating a new generation.

Cheers,
Dvora

Gina001

Thank you Dvora for your post. And thank you to the rest of you who have been so welcoming in this community. I think it is great that we have each other here. Many of your posts have been more useful and informative to me than any of the doctors I have seen. So thank you!

-Gina

Rose5

Hi all and welcome to all the new members :)

I havent been in this community much as I have been talking in the other one, its done through email so its sorta easier

-- if you havent joined - you should come and have a look

copy and paste this link below

http://listserv.buffalo.edu/archives/

then down the bottom of the page you will see Wilson Disease

come and check it out....most of the ones from here are in there as well :)

Hope this finds you all smiling

hugs
Rose
xx

kitcat629

Hello,
I am the mother of a 14 year old boy that has just been diagnosed with wilson's. They say he has to have a transplant. SCARY!!!. not sure which end is up. Many liver numbers are starting to decrease, but bilirubin is increasing. they were hopeful that it may correct itself, but now they say it won't.
Could use any help from anyone. thanks

Rose5

Hi Kitcat
how are you and your son ?
What are they giving him for WD?
Take a deep breath as I know exactly how you feel trying to take in all the information..

my daughter(15) was diagnosed in Nov 2007 and she was sitting on the fence with her liver as well as it was pretty bad -- but with trientine and zinc -- she has come good.
We are still doing monthly tests keeping an eye on the liver function..

what is the update with you?
stay strong
Rose
x

lilactree

Hello everyone- I was diagnosed with WD in 1976 at the age of 12. I was on D-Pen until about 2000, when I switched to zinc after attending a WDA conference in Chicago. I learned about this group in a very strange way- I received one of those forwarded humorous emails from a friend entitled "I owe my mother" and I was scrolling down to read it. What caught my eye was a little emblem or badge with the words "mom2six" and "WDA discussion group" with a link to this site. I have WD so of course I was very intrigued. My friend does not know who "mom2six" is- but I decided to join this group. I guess you never know where those forwarded emails end up! I am one of the lucky ones with WD- I am now 45 yrs old with few lasting symptoms and a great husband and 2 beautiful teenage daughters (pregnancy was not a huge problem.) I have never joined a site like this and so I'm still trying to figure out how it all works.

mom2six

lilactree-Hi and Welcome!!!

Holy cow! I think the mom2six would be me! I'm sitting here skimming threw posts at the same time as brushing my daughters hair for school, I caught my "name" out of the corner of my eye. I had to stop and reread! I couldn't help but smile seeing that my "wd badge" at the end of my emails brought someone here! To be honest, I thought most people found it annyoying or just didn't pay attention to it at all. Glad to know I touched someones life in a positive way through a humerous email!
Thanks for making my day!
Have to run the kid's to school now. Probably post more later.
Ps..lilactree..i'm sure my "story" of how I got here is posted if you scroll through past posts..if not I'll be happy to explain again.
Take care! and Glad you found us!
~Michelle

buddynusa

Hi Rose,
Ive been doing great. all blood test number have been well with in standerd .Guess God loves me alot.I I did get your e mail a while back just havent replied.
You have a son being tested now ?
hope all is going good for everyone here . Take care
may God bless all of us.
Jim

McVeggie

Hi all and welcome aboard! mom2six hehe I am glad your badge brought someone new to this community too hehe. Only if I knew how to insert that badge to my email signature. I proabably know just need to read the instruction carefully. Just lazy to do so that's all. hehe Welcome lilactree and Gina. lilactree, I must say I admire you. Being on D-Pen for so many years. I was diagnosed sometime around 1995 was put on D-Pen as well. I was around 18 didnt graduate high school until i was 21 because of it.

Back then there wasn't as much information on the web for wilson disease as there is now. So, I complained to my doctor that my stomache hurts so bad after two year of taking the med. my doctor reduce my dosage so it would make it a little bearable for me.

By the way I must say I was fairy lucky I got diagnose with it on first visit to my neurologist. Didn't got the million of misdiagnosed conditions being on million other wrong medications as others has. I had went to my primary care doctor prior to the visit of my neurologist. My PCP didn't see anything wrong with me and didn't feel there was a need for futher check up with the specialist. It was my high school social worker who went and got me for some testing. Who noticed there was something terribly wrong with me. Insisted on making me an appointment to goto the hospital and see the doctor there. I owed my life to her. God bless her she passed away before I even graduate from high school. I never had the chance to properly thank her. She had cancer herself. She died from the cancer.

Oh by the way I am Karin and 31 yrs old from Flushing, NY. Technically I am 32 this year but since my bday hasn't pass yet so that still make me 31 haha. I am about 6 week into my pregnancy now. I pray that this baby stay and be a healthy baby. I am doing everything I can to make sure the baby will be healthy.

As I think this is my only chance of having the baby. I am approaching high risk child bearing age. Since pregnancy, I took myself off on D-Pen. and started taking zince gluconate. My current neurologist won't do much research on the other theropy for me. She wants me abort the baby. Tells me the risks i am putting my baby on by taking the class D medication causing birth defect is great.

Gina, I know how you feel about the medical cost. I was still consider minor when I was diagnosed. My parents has some money in the bank account they had to take it all out because of me. So all their saving wouldn't have to pay the medical bill that I had. I filed my own tax to be independent fairy soon right after that. Just to be on medicaid so I can see any doctor for free and don't pay for any prescription drugs. email me directly at mcveggienuttie@gmail.com I can give you some tips as how me and my parents did it. So you can actually save some of the hard working money. Money nowaday is hard to save and very easily spend. hehe

haha i think i talk to much ;p~ let me let other has the chance to talk. hugs all may everyone stay healthy!

karin~

McVeggie

Oh Oh I forgot Rose PLEASE!!! send some of the sunshine this way would ya? it's nice and sunny here today but it won't be like this for long.
hehe

Rose5

hehe - that post was started December 2007 - wow 9mths ago, thats old news Jim .. I am so glad to hear all is well with you :) Seems like just yday we were asking questions about WD and finding out all that we could...I am not complaining that time is moving and we are getting these copper levels where they should be :)

We are in Spring in Australia, Karin .. I am looking forward to the nice weather again :)


Welcome Lilactree -- good to see you here :)
This community was a life saver for me when my daughter was diagnosed in November 2007

Hope this finds you all well and stay safe
hugs

Rose
xx

McVeggie

;p~ Rose, hope this year's winter isn't as burtal as some of the year we had here. I remember one year I was in Utica, NY for schooling May comes, time to go home for summer vacation still got a whole foot of snow on the ground stack up nicely on the road side.

Where is aussie are ya Rose? I have friends in Melb. I may go visit them one of these day. Not anytime soon I think as I am a little shorts on saving now.

hugs and be well~ hopefully one day some genius will come up a cure for WD! I am keeping my finger cross for that. ;p~

karin~

Rose5

Hi Karin

We have just passed winter and are now in Spring and the weather has been lovely :) We really have nothing to complain about in winter as they arent as cold as what you get :P

I am in Melbourne too Karin - if you ever come to Australia, let us know :)

Yes we all dream of a cure -- but I am thankful that we can manage WD. As long as we stay aware of our progress and have check ups -- the medical field learns more and more daily :)

hugs and hope this finds you well
Rose
xx

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