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annsnow
@annsnow

Posts: 3
Joined: May 18, 2018

wilsons desease ......

Posted by @annsnow, Sat, May 19 12:19pm

ive been diagnosed of wilsons desease for 8 years now. lately my abdominal is expanding due to organs swelling. i just need to know if anybody is suffering the same or if you know anybody that had been diagnosed of a wilsons desease. i would love to chat to comfort me and you as well. so we will be aware of the prognosis of this desease … thank you ANN L

REPLY

Hello Ann @annsnow, welcome to Connect. I'm hoping other members who are aware of Wilson's Disease will join the discussion and offer some advice or suggestions from their experience. I see from reading the information on Wilson's Disease on the Mayo Clinic website that Wilson's disease is a rare inherited disorder that causes copper to accumulate in your liver, brain and other vital organs.

https://www.mayoclinic.org/diseases-conditions/wilsons-disease/symptoms-causes/syc-20353251

Ann has your doctor suggested any kind of treatment plan to help you?

I did find some other information on Wilson's Disease that may be helpful.

National Institutes of Health — Wilson Disease
https://www.niddk.nih.gov/health-information/liver-disease/wilson-disease

NIH – Genetic and Rare Disease Information Center – Wilson's Disease (see Treatment section)
https://rarediseases.info.nih.gov/diseases/7893/wilson-disease

Please keep asking questions and advocating for yourself. There are a lot of us here on Connect with different and/or rare disorders but we have one thing in common, we are all trying to help ourselves and each other by sharing our experiences and treatments.

John

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

@annsnow

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

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Why WD Medicare not pay. Get a letter from your present doctor who wants youvtp take med again.

@annsnow

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

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Who misinformed you. Get a letter from that Dr also. That might be hard.

@annsnow

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

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Ann @annsnow, I found the following site that may help.

What Can I Do If Medicare Doesn’t Cover a Drug I Need?
https://www.ehealthinsurance.com/medicare/part-d-all/what-if-medicare-does-not-cover-a-drug-i-need

One of the things listed is to talk to your doctor and ask about substitute medications or request a formulary exception.

@annsnow

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

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THANK YOU so much for your respond Sir JohnBishop

@annsnow

i was taking cuprimine before, but i stopped for 2 years cz i was missed informed that i shouldnt stop taking my wilsons desease medication. NOW THAT MY SYMPTOMS ARE COMING BACK. my NEW HEMATOLOGIST in Florida, Jacksonville which i lived now. he wanted me to take my medication again, BUT MY MEDICARE WOULDNT PAY. I AM SO FRUSTRATED, I REALLY NEEDED TO TAKE MY MEDS TO STOP MY ORGANS FROM SWELLING. ANY SUGGESTIONS WHERE CAN I CONTACT ANY RESOURCES TO COVER MY MEDICATION???? PLEASE HELP….

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I hope it helps you get the meds covered by Medicare @annsnow. Can you let us know if they cover the meds? Thank you!
John

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

@oldkarl

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

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@ Dear Oldkarl Peach here: I am going blind. I respect your advise. Would you advise The Mayo Clinic Eye Department or Baskin Palmer University in Miami? Please. Peach414144

@oldkarl

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

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@peach414144 Hi, friend. I don't have a clue which would be better. I just know I have had to fight hard to get questions answered by almost any medical facility. The real key for a Expanded Access Or is it Extended Access, is to watch that webinar from ARCI.org having to do with the law and the practice of clinical trials and high priced medicine. Anyway, I figure I am getting almost close enough to the pearly gates to smell them, so as a last resort, it is time to beat the doors of Alnylam, Pfizer, etc. Oh, and about my eyes, I am slowly but surely losing my sight to corneal amyloid dystrophy and purpura (bloody spots) of the cornea. I shall try to look up Baskin Robbins….er, Baskin Palmer. I do prefer one over the other.

@oldkarl

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

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@peach414144 Hi, again, Peach. Just from a quick look, and some experience with Mayo Arizona, I think I would go to Baskin Palmer. The biggest problem with Mayo is that they spend enormous sums of money trying to find something that might be the cause of your problem, rather than what everyone else knows is wrong. If they put a little more money in their medical care and less in their buildings, they would get a better ranking, I believe.

@oldkarl

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

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@peach414144 – Hi – I lived most of my life in the Washington D.C. area. The Wilmer Eye Clinic in Baltimore, Maryland is well known. It is under Johns Hopkins. I had friends that had eye problems and they always used the Wilmer Eye Clinic.

What is the name of disease taking your eyesight? I am being seen by a Rheumatologist. I am treated for RA. Wait what am I saying. I am no longer being Treated. I have NO pills from her. I had two infusion And 2 more coming. I don't know how others handle pain.. I almost thought I was cured. And yet my pain keeps me in bed when it picks up again. When Texas finally allows MJ, I will never see these heartless doctors. What is wrong with them. Go ahead, check Genisis and see where ALL herbs are for us. The seed of Marijuanra plant gives us that right. Unless I am wrong and Marijuana does not have seeds. Then no, we should not use it.
I am jealous of college kids having access to it. I have to be honest….if I used this during college, I would never have passed.

My eye sight is failing. I have had a harder time with my eyes. How many of us have been thrown to the side of the road. What is disease called

@oldkarl

@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated a girl named …. Oh, forget that. Anyway. Does any Pharmaceutical company make a medicine you and your doctor think you need? If so, contact that company directly together. Look on their web site to see who in the company handles their clinical trials of that med, and ESPECIALLY any "EXPANDED Access" program for that med. Then talk to that person with your doctor, and see if that company can help you with what you need. It is an old practice, but a new law that makes it very helpful. The The Amyloidosis Research Consortium (ARCI.org) and NIH have a good webinar available to explain just that program. Tell Them I sent you. https://bit.Ly/1w7j4j8

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I am loosing my site in my left eye. I wonder……the eye doctor wrote me THREE scripts for glasses. As if I can even afford one. BUT, then I thought wait a minute…if this is my disease causing my eye problems, shouldn't my health insurance cover the expense of my glasses?

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