Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

disturbing 3 months for a 20yr old girl

0 Recommendations

so, here's how it all started:

it was almost three months ago when i woke up and noticed severe unexplained edemas on my legs, so i immediately went to my doctors. they took a blood and urine sample and did few other tests, and found out that the edemas were a concequence of the very low albumine levels in my blood. they said i had proteinuria - lost a lot of proteins becouse of an intensive exercise i did few days before. they recommended a high protein diet and in the meanwhile i was being put through a LOT of tests, laboratory checks etc. at different clinique departments to find out what is the acctual reason that caused these edemas. nearly two months passed and there was no improvement in my condition, but luckily there was also no worsening - for this whole time i haven't had any other symptoms, problems or pain, thank god. finnaly i was sent to the gastro-department and diagnosed with a liver disfunction (one other pointer was that my coagulation factors were not "working well"). for a while noone knew what had caused this liver disfunction, but then they suspected it was the wilson disease. having in mind that macedonia is a poor country and the hospitals have this old technology equipment, my doctors decides i should be sent to the AKH hospital in vienna, so that's how last week (after the liver biopsy) i was finnaly and undoubtedly diagnosed with WD.

now i am back in skopje, feeling perfectly fine (apart from the pressure i feel in my legs because of the edemas) and in the process of being treated with d-penicillamin. in this past months i had (and still have) often diarrhea and gas problems (i'm not sure if it's related to WD, but i just wanted to mention it) but i have no other sypmtomes or any problems, thank god!

a thing that concernes me most at this time is that, according to the AKH doctors, the copper caused some cirrhosis but as i understood it is still in an early stage. however, i am still in the need of advices how to heal it, or how to stop it from progressing, because strangely noone recommended any dieting, food supplements or alternative medicine, apart from the therapy i should take.

finally, becouse of the penicilamin therapy the doctor said it is necessary for me to do weekly blood tests for the leukocytes and tromobocytes level, and to come to viena again in six weeks so they could do a complete check on my condition. i pray everything goes well...

Explore topics in this journal entry and replies:

Exercise Wilson disease Proteinuria Pain Cirrhosis Penicillamine Dieting Diarrhea

4 replies

Hello,

I was misdiagnosed as liver cirrhosis for two years from 1992. I was 17 years old. I had low Albumine and Platelet level.
I was treated with penicillamine from 1994 and TM from Dr Brewer in Michigan and the Galzin...now I am taking Zinc Picolinate(over the count med).

My blood work is normal now.
After most of copper has been removed from your organ you need to change the treatment to some type of zinc to maintain.

If you take medication properly you won't have any problem. : )

So nice to hear you are doing fine. I'm going to keep on with the medicine as i should, and hopefully everything will be ok.
And thanks a lot, your words are very encouraging!:)

Just be thankful your symptoms aren't worse and keep praying that they don't become worse. I am amazed that a diet wasn't recommended. You should not eat foods or drink anything that is high in copper content...such as mushrooms, beans, soy products, etc. These foods can cause more damage for you.

My 32 year old brother was diagnosed with Wisons Disease last summer. He has more the neurological effects than the liver effects though. In the last month he has deteriorated so bad that he can't walk, he can't talk, he can't swallow, he can't control his bladder. Thank God we have received good medical care but no one is sure since his damage is so bad that he will ever recover.

This disease is horrible and gone undiagnosed for years it does terrible things to a person. Make sure your doctors are taking care of you and get on the internet and research the disease to make sure you understand everything you can about it.

AmyKofKS, I really sympathize for your brother and truly hope he gets better! I've read a lot about this disease and I know it can be pretty scary but I do pray I won't ever feel that horrible... :(

Just yesterday I e-mailed my doctor to ask about the dieting and he replied that no diet is necessary, just to avoid nut, cocoa products and mussels.

I'm also in contact with a lot of experts in WD and right now they are mentioning something about switching me to trientene, since it has much less side effects than d-penicillamine, but nothing is still certain. However, I do think I'm in good hands and I do everything what the doctors say.

I'm still being positive, as much as I can be.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

You