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Wilson's diagnosis

baffoon11
0 Recommendations

Hi,

My best friend was recently diagnosed with Wilson's Disease. He is 32 and had been having neurological symptoms for about 8 months. The symptoms have worsened in the past few months to the point were he can barely speak or walk without falling. He has started treatment, but he is unable to communicate much to me. Unfortunately he is going through a divorce as well, so I haven't been able to get much information from his family. I am hoping to be able to offer as much support for him as possible, but I want to make sure that I am informed. Can the neurological effects be reversed with treatment or will the treatment only keep them from progressing. Thank you! I think this community is wonderful.

Explore topics in this discussion:

Wilson disease Penicillamine Physical therapy

6 replies

baffoon11

Thanks, I will let him know about Dr. Askari. I will keep you updated.

-Melissa-

Oh! I'm in Minnesota, but I actually go to the University of Michigan and see Dr. Askari, because I think they're better for WD than the Mayo clinic here, from what I've heard. If I were him, I'd still think about at least contacting the University of Michigan and seeing Dr. Askari or having his doctor consult with Dr. Askari to make sure the treatment is working the way it should. They are a WD Center of Excellence. You can never have too many opinions!

Glad that he's on Trientine vs. Penicillamine though.

I hope he starts to make a little improvement. Just know that sometimes we do develop more symptoms on the way to recovering, but they are temporary and as the copper is coming out, the body will begin to heal and repair itself and symptoms will start to go away or at least get a little better.

I'm glad that you've come here to find a way to support your friend though this tough/stressful time.

~Melissa

baffoon11

Thank you! I talked to him today and I believe he said he is on Trientine, but I was having a hard time understanding him. Yes, we are both in Indiana. I believe he was originally supposed to go the the University of Michigan, but he ended up going to the Mayo Clinic in Minnesota instead. He has to go back for a checkup in November, but he said that his Doctor stays in touch with him weekly. I will definitely pass the information on. I told him about the website, so I hope that he will join the Group. I think it would be beneficial for him.

-Melissa-

Penicillamine isn't the treatment of choice by wilson's disease doctors, especially in Neurological presentation of WD. It can cause a lot of side effects and cause people to get worse. I would recommend that he try to see a doctor who specializes in WD. In the "old days" Penicillamine was basically the only WD medication, and since WD is rare, a lot of doctors aren't familiar with newer and safer treatments, so they just blow the dust off their old medical dictionaries and look for the information they need about the disease. Not to scare you, but it is serious. If the medication is causing him to get worse, there can be more damage done and might not be reversible.

I see that you're in Indiana. Does that mean your friend is too? If so, I would definitely have him look into going to the University of Michigan to see Dr. Askari. His information can be found on the Wilson's Disease Association website, but I'll include it here also. Yes, it would be a little drive, but it would be SO worth it, if your friend could get the appropriate care from a doctor who is a well known specialist on the disease. There is a WD Center of Excellence at the University of Michigan and that is where Dr. Askari is.

Here is the contact info for the University of Michigan/Dr. Askari, so you can pass it on to your friend:

Fred Askari, M.D., Ph.D.
Liver Clinic
Pod D, 3rd Floor Taubman
Ann Arbor, MI 48109-0352
Phone: (734) 936-0499
Fax: (734) 763-4574
Appointments: Contact Patti at 800-395-6431
E-mail: faskari@umich.edu

Here is a good source of information for you and your friend. It's the Practice Guidelines for the Diagnosis and Treatment of Wilson's Disease. http://www.aasld.org/practiceguidelines/Documents/WilsonDisease2008.pdf

Good luck!

~Melissa

baffoon11

Thank you so much! It definitely provides me with some hope for his situation. He has only been on medication for about 2 months and I believe he is taking Penicillamine, but I am not positive. I know that he said he had gotten worse since starting the medication, but that was one of the initial possible side effects. I will try to post more as I continue to get information. Thanks again!

-Melissa-

Hello,

I'm glad you found this site. How wonderful for you to come here to find support to help your friend.

Neurological symptoms can sometimes be reversed. It depends on how much damage the copper has done to his brain. As the chelator begins pulling the copper out of his body, his brain will slowly begin to heal. Sometimes the damage can be reversed, but sometimes there can also be some permanant effects/damage. If he's having trouble walking and talking, it would probably be beneficial for him to see a speech language pathologist and maybe do some physical therapy to help with his balance/walking.

How long has he been on the medication? Do you know what medication he's taking?

Also, check out the Wilson's Disease Association website. There is a lot of great information on there that can help you learn about Wilson's Disease.
( www.wilsonsdisease.org )

I hope that this information has helped you some. Let me know if you have any other questions and let us know how your friend is doing.

Wishing you (and him) the best!

~Melissa

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