1. < Autoimmune Diseases

Wilsons disease ......

Posted by annsnow @annsnow, May 19, 2018

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

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oldkarl | @oldkarl | May 26, 2018
In reply to @oldkarl "@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated..." + (show)
@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.

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tinkerbell | @tinkerbell | May 26, 2018
In reply to @oldkarl "@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated..." + (show)
@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.

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Texas Freedom | @oregongirl | May 26, 2018

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.

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Texas Freedom | @oregongirl | May 26, 2018

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

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Texas Freedom | @oregongirl | May 27, 2018
In reply to @oldkarl "@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated..." + (show)
@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

Jump to this post

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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peach414144 | @peach414144 | May 27, 2018
In reply to @oldkarl "@annsnow Hi, Ann. I don't know a thing about Wilson's disease, except that I once dated..." + (show)
@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

Jump to this post

@Sorry, I seem to be losing it. I meant Baskin Palmer in Miami as vs The Mayo Clinic. No need to respond. I do appreciate your answer and I do pray for you. Sincerely, Peach414144

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