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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

Such_a_Bird

Thanks for the warm welcome, ladies!

I'm getting better at taking all three of my Galzin pills per day--I try to space them out between 6-10 hours each, depending on when I eat during the day.

When I said that I have irregular eating, sleeping, and working schedules, I mean that I work a couple of overnight shifts per week at one job, some evening shifts at another job, and occasionally a morning shift here and there. I also watch my baby when my wife is working. Sometimes I go without sleep all night and all day, and other times I sleep late into the day after working all night.

I don't live with a predictable rhythm to set my Galzin intake to. I am currently shooting for: 5:00 am, 1:00 pm, and 9:00 pm (give or take an hour or two).

I have an ultrasound appointment coming up at U of M next month to check for liver abnormalities. I am looking forward to that to see if there has been any change in my liver function recently. I'm still waiting to hear from them about my blood tests and two 24 hour urine tests from a couple of weeks ago when I saw Dr. Askari. No news yet, so I assume that there are no serious problems.

I appreciate the support here, but don't worry about me. I'm a happy person, and don't dwell on the negatives very much.

I hope that all of you are as stable and healthy as you can possibly be.

Thank you again.

Take care, and talk to you soon.

Rose5

welcome such a bird..

wow you were lucky - glad that you are realizing how lucky you have been :)

WD affects people all differently

nice to have you on board :)

Rose
x

-Melissa-

Welcome! Glad that you found this site and also glad that you found Dr. Askari. I travel to Michigan annually to see him too. I actually live in Minnesota. I was diagnosed just about two years ago now.

It sounds like you've gotten very lucky with the risks that you played with your health through the years! I hope that the Galzin will start to be a little more gentle on your stomach. When I first started the Galzin exclusively I was fine and after about 6 months I started getting really nauseous and feeling like crap too. I ended up taking Omeprazole to help my stomach and since starting that this past January '08, I haven't had any trouble with the Galzin hurting my stomach.

I agree that it can sometimes be hard to get into the "swing of things" with taking the Galzin 3 times a day and avoiding it before/after eating, but it will get better once you figure out a schedule. For me, I set my alarm a little earlier in the morning just to take my Galzin, then go back to sleep for another hour or so and by the time I'm ready to get up for the day I can eat breakfast. Then I usually just wait about 5 hours after eating/drinking anything besides water and take another Galzin, and then I usually take my last dose shortly before going to bed. I usually get in bed and watch a little tv before actually sleeping and I take my pill then. Just a little idea of a "schedule" you could try, if you're having a hard time with it.

~Melissa

McVeggie

Welcome aboard, just a bird? yes you are very lucky indeed. hehe I always wanted to donate blood as well. But I can't too. I am having a baby on the way as well. I am so excited. Life is going to be tough for the baby I am about to have and me. However, I know we will make it. Best of luck to you and your family wishes all the best.

take care~

karin~

Such_a_Bird

I am new to this site, but have known that I have had Wilson's Disease since I was eighteen-years-old in early 1993.

After over fifteen years, I am finally strapping myself down for some serious discipline in order to address the subject of the relative fragility of my mortality....

I am a very lucky person in that I have never outwardly displayed any signs of Wilson's Disease. I feel even luckier after seeing the stories that many of you are posting here.

My journey of discovery began when I was eighteen-years-old in the Autumn of 1992--just when I was beginning college. There was an American Red Cross blood drive, and I wanted to give up some of my blood for the first time in my life just because I COULD. I was old enough to make my own decisions, and I wanted to be of help to society and the world.

Well, it turned out that my blood could not be used after it was initially screened, but the outcome was ultimately really good for me, because I was directed to see some doctors and undergo further tests. My blood donating career was over after just the first time I tried.

For the next several months I saw many doctors and multiple tests were performed to narrow down the possible causes of my affliction. Up to that point, all that I knew was that I had "bad blood".

By early 1993, it was determined that I had Wilson's Disease. I didn't worry too much about it at the time.

I continued on with my life as a college student, living the way that I wanted to--sometimes even swallowing my Penicillamine pills with wine or beer chasers. Kind of "not-so-smart" in retrospect, but as I said before--I never outwardly displayed any signs of Wilson's Disease.

The slit lamps never saw any Kayser-Fleischer rings in my eyes, and two liver biopsies and countless blood and urine tests from several doctors and gastroenterologists did not explain very much to me, except that I had a slightly enlarged and scarred liver and some mysterious liver enzyme numbers outside of their normal ranges.

I continued on with my life as usual, as my Cuprimine pills were reduced from three-per-day, to two-per-day, to one-per-day, to one every OTHER day, and then back up gradually to three-per day by my doctors.

This went on for years, as my various primary care physicians and gastroenterologists under several different health insurance policies tried to figure out how to regulate my copper level.

I began to wonder if I even really even HAD Wilson's Disease.

Well, after switching from thirteen years of bitter-tasting Penicillamine pills in varying daily amounts, to about one year of Syprine treatment with a couple of months of NO treatment in between, I finally found Dr. Askari at the University of Michigan Hospital and saw him in May of 2007 for the first time.

He assured me that I DO actually have Wilson's Disease, and that if I were to continue to drink my wine on an even semi-regular basis, that statistics suggested that I would probably be dead by sixty.

Now I am on Galzin. It upsets my stomach when I take it three times per day. I am having a hard time spreading the doses throughout the day, because I have a consistently irregular and fluctuating working, sleeping, and eating schedule.

I don't like the daily feeling of nausea. But other than that--I feel just fine.

I have been living in Michigan for my entire life, and have always resided within a couple of hours' drive from Ann Arbor, where the Wilson's Disease Center of Excellence is located. I wish that I had found it sooner.

Now my wife and I have a baby who was just born this year, and she has become the center of my life. I have already successfully lived through my immortal stage (my twenties). Now, I am becoming more careful. I want to transition smoothly into middle and old-age before I pass on from this world.

Like I said, after reading some of the stories here, I feel very lucky. I have accepted that I have Wilson's Disease, and I am just coming around to understand what it can do to a person.

I am not going to let it take me down easily.

I hope to continue to hear some of your stories, in order to help me to keep my discipline and increase my knowledge base to face the ever-present potential threat of Wilson's Disease in my life.

Nice to meet you, good luck, and take care...all of you.

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

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

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

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

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~

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

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

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.

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

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 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

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

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

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

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

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