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Brother with WD is really bad

AmyKofKS
1 Recommendation

I posted a message a few weeks ago concerning my brother who was recently diagnosed with WD. I received responses with encouraging words but am posting now because it seems like overnight the disease, which affects him mainly neurologically, has progressed so terribly that he can't get up, he can hardly talk, he can't see well, he can't control his bladder, he tremors constantly and his body is so contorted he is in constant pain. Since this disease is new to us we (his family) feel like this is the end for him and we are so terribly sad. I can't stop crying today. He has no health insurance so I'm sure he's not receiving adequate care...he is taking Syprene though. Can anyone tell me if these symptoms are typical and that he'll improve or does this sound like he's progressing and he's going to die? We are working as a family to get him financial assistance but I'm afraid it's not going to come soon enough. Please, can someone share their stories so I can maybe know what to expect. Thank you.

Explore topics in this discussion:

Pain Wilson disease Syprine Dystonia Cuprimine

17 replies

-Melissa-

Hi Amy,

I'm sorry that he's having these increase in symptoms. Have you been able to get him in to a doctor who is more familiar with WD? Or at least have someone consult with a WD doctor on his behalf? Could the dosage of his medication not be right (too little or too much)? Maybe the WDA (wilson's disease association) would have some suggestions for you?

I know what a stressful time this is on your brother and the whole family. I'll be thinking of you and hoping that things start to improve.

~Melissa

RICHA

Dear Amy,

I was diagnosed as a patient of W.D. 23 years back. At that point of time my condition was similar to what you have described. After 6 months of the begining of my treatment improvement started slowly, but steadily. However, for 1-2 years, I remained in very poor condition (with tremors, unclear speech, difficulty in swalloing, unbearable pain, etc.). But I was improving and today tremors are rarely visible, I completed my education(M.Com and M.B.A. - Finance), I am having a good job. Regular treatment and OPD check ups are very important in this case. We are fighting against the sufferings and have succeded/ will succed in our struggle.

Best wishes to your brother, to you-the loving sister and to your brave family!

Love!

Rosepetal

Amy4

My son was diagnosed in July 2007, he was dibilitated very quickly. He had to have a feeding tube, and can't talk or walk and trouble with his bladder. I am very sorry your brother is going through this and you your family. It is a very scary disease. The neuro damage is not deadly even though I grieve the loss of function. Clay was incredible pain for about 6 months when the dystonia was so severe. He was not on Syprine right away, he was on TM first and syprine almost a year after diagnose. He is 18 now. His pain has been under control and he has leveled off. He has been in therapies all along. The important thing is to get your brother to move what he can and keep his muscle. So when he gets the connection back he will have muscle tone. Clay is still not funtional. He can't bath or dress or go to the bathroom on his own. He still has a feeding tube and can't talk. He does still have all of his muscle tone it just doesn't always connect. He talks on a letter board. He has an incredible attitude. There's no guanantee on amount of recovery of what was lost or time. I'm not trying to scare you, just being real from someone who has been going through this time for almost two years. We just have to keep on keeping on and keep the faith. They are still there mentally and need to be treated as such. My email is akc_n_nc@hotmail.com if you want to talk anytime.
You're a great sister, Clay has a great loving sis too!

buddynusa

Here is a link to Americcan Association For The Study of Liver Diseases http://www.aasld.org/practiceguidelines/Pages/MetabolicGeneticAutoimmuneLiv erDisease.aspx
here you can read about all studies, dianosis and treatment. Of Wilsons disease. you should make sure his doctors are following these practice guidelines.
may God be with your brother and all your family .
takecare Jim

tis2a6

i applied for syprine with national organization of rare disorders, inc. and will be getting syprine for one year.
i am 48 year old male diagnosed 7 months ago. they were an extremely helpful and compassionate friend
call 800-275-0589.
i too currently have insurance but surely will lose it because i donot have the finances or enough energy to do 2 or 3 jobs. it is really scary to think about the future.
MAY GOD BLESS YOUR PRECIOUS BROTHER AND YOUR SUPPORTIVE FAMILY. KEEP THE COURAGE TO MOVE FORWARD AND DONT GIVE UP.

thuthuy

Let me start by saying my heart cries with you as you try so desparately to understand the harsh cruelty of your brothers situation. I send you my prayers.

I know just how horrible our healthcare system can be to the uninsured. My brother recently died from Wilson's disease because of the politics that occur when a person does not have insurance. Let me also say that even though the red tape is thick for the uninsured, it is often just as frustrating for the insured who get denied treatment because and insurance company doesn't want to pay.

My brother lived with Wilson's for 8 years. The best medical care he recieved was at the Rochester Mayo Clinic in Minnesota. Somtimes the only way to win is to play hardball and never take no for an answer from your doctors, nurses, whoever. There is always a way and if we don't find it fast enough, then we must fight for what is right so it wont happen to others.

God bless and Peace

RICHA

Dear Thuthuy,

My dearest brother and mine story is also exactly the same as of yours. I am from India not having any medical insurance. Though I am working but a big part of my salary goes in my treatment. I am unable to give any type of financial support to my family currently, though they are happy that at least I am able to bear my expenses myself. I got medical aid from my hospital twice which helped me a lot. I dislike asking for help from charitable institutions. Government help is full of red tapism and is almost impossible to get, though I received a little aid through my hospital once. Life is such a struggle. There is pain of loss but still I have wishes and beutiful dreams which I want to fulfill on my own in this life only.

Love and best wishes and let us fight together against all odds!

Rosepetal

Manickmutt

Hello,

I too had terrible neurological symptoms that lasted for over a year (followed by psychiatric ones- they strike about 1/3 of WIlson's patients). I was treated at a public hospital in Bronx NY for three months, part of that time receiving BAL injections daily, which were enormously helpful in getting rid of the copper. At the same time I was taking large doses of cuprimine. I now take zinc, which is for maintenance and not effective in getting rid of excess copper which has already been absorbed.

As for the financial end, I believe there may be some hospitals (National Institutes of Health for example) which treat some illnesses for free, as they are research institutions. When I was hospitalized in the Bronx (1977) it was on a federally funded floor that treated certain types of metabolic illnesses. My hospitalization didn't cost a penny. However, the Reagan administration cancelled that funding.

Some states have programs that provide very low cost insurance. Your brother should be eligible for Medicaid if he is so ill. The best way to go about getting that quickly is to get yourself an advocate like a congressman or senator (ones who are running for reelection are more willing to help). They can make calls to speed up the process.

Good Luck! I am doing great and work fulltime and take courses. It is possible!

Lorie

guds

hi Rosepetal,
Very encouraging to see ur reply. My friend has recenetly been diagnosed with WD. R u from india if yes pls let me know as we have yet to start the treatment but all confused about lot of things. I read post from u some where refering ur treatment in AIIMS... if yes then would like to connect with u.

thanks

RICHA

Dear Guds,

Yes, I'm from India and undergoing treatment from AIIMS. About my treatment, initial symptoms etc., I mentioned in my post 'With WD'. I hope your friend and you would already have gone through it. Its nice to see your concern for your friend. In India, still Penicillamin is being used as major treatment of WD as Syprine,etc. are not available in India. In my case this treatment has worked a lot. The patient should also keep some patience as improvement will not happen immediately but will take some time.
Best wishes!

Rosepetal

guds

Sorry for using this discussion board and i wish the lady all the best for his brother...i can understand now what it means. Rosepetal, thanks for the reply ..i have sent u a friend invite with details. My mail id is gudsindia@gmail.com. Pls give info on doctor in AIIMS / reply to me my on this id... waiting for ur reply. Pls write at gudsindia@gmail.com.

RICHA

Dear Guds,
No need to be sorry as this discussion board is for discussing problems related to WD only. However, as this matter is sensetive and related to people suffering from WD and their relatives, we don't like any one joining this board with fake stories just for fun. At AIIMS, Dr. M.Tripathi, Assc. Professor -Department of Neurology could could be contacted for WD related problems. If your friend is also having some liver related problem, ask the Doctor to refer your friend to the G.E. Department also.
Best wishes!
Rosepetal
Best wishes!

guds

thanks Rosepetal and please be assured that i am truly looking for help. Thanks a ton for the doctors name. Also again pls advise what to do with drinking water. I will check with Aiims and get the appointment.
Guds.

RICHA

Dear Guds,
I use ordinary filtered or boiled water and I am doing fine with it. You may ask the Doc about this. I also would like to inform you that Dr. Tripathi's OPDs at AIIMS are on Monday, Wednesday and Friday(Friday only for old patients). Pl. keep me informed about any developments regarding your friend's treatment.
Best wishes!

Rosepetal

guds

thanks a lot Rose. I have replied u on your discussion board..:with WD" as this discussion board was started by the Amy for her brother so i should not be using it for my queries and should have it seperate.

Hope her brother recovers fast.
guds.

Amy4

How is your brother doing? Keep holding onto hope.
Amy

kowings

As far as uninsured I agree with Lori. if you are 19 or older you are considered an adult and can qualify for disability with the help of your physicians. After two years of the disability you can qualify for Medicare which is premium pay and will get you in most Treatment programs/ offices for treatment. This takes a great deal of effort and as she states you may need to involve your senator or local representative but it is so worth it to have the comfort level that you will have access to the care you need. Hopefully healthcare reform will addresses this and it will become easier to qualify.

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