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I have Scleroderma and now I have a hard time sleeping, walking and doing daily activities. I have been denied at Social security because I make too much a month. I am the only income in my house and the scleroderma has attacked my liver and I need a new liver. The cirrhosis has shut my liver down.


The pain from the cirrhosis, fatigue and now I can't get a doctor's appointment for a month to see me has been frustrating!


Does anyone have any suggestions?

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Hi Jason,


Welcome to these forums!


I'm sorry to hear that you are suffering Scleroderma Liver Involvement and I've included a link to our medical page to give you some more information.


We also have a page on Disability Benefits, which I hope will be helpful to you.


I can understand how frustrating it is to be unable to obtain the correct medical help, advice and treatment for scleroderma and so we do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise.


Kind regards,

Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I too have been denied any benefits, but I have no income and live on investment income alone. The reason I have been denied is apparently that I can put my own shoes and socks on just about, albeit just doing that causes great pain and muscle spasms.

Liver involvement must be awful and I can only imagine how much you are suffering.

I hope you get a new liver and are soon on the road to recovery.

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P.S., all my problems seemed to start following a period of insomnia. I have found that increasing activity as much as I can to be helpful along with a program of sleep restriction.

I take a low dose of amitriptyline nightly which also seems to help.

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