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10/27/2009 23:28
cindy850 
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10/27/2009 23:28
cindy850
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No Treatment
Was wondering has anybody did nothing for this disease and loss total use of their hands. And if so how long did it take before you loss all usage? Take care
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10/30/2009 01:36
callie
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10/30/2009 01:36
callie
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Re: No Treatment
I know many people who have done nothing and their Dupuytren's caused them very little problems their entire life. Often the disease does not get worse.
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11/04/2009 17:56
bstenman
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11/04/2009 17:56
bstenman
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Re: No Treatment
There is very limited research on Dupuytren's progression but not treating it seems like a foolish gamble that it will not get worse. X-ray treatment has been shown to limit the progression of the disease. All of my reading indicates that it is a progressive disease. My own experience has been that the medical community is woefully ignorant for the most part and relatively disinterested in the disease or people suffering from Dupuytren's. IBS gets more attention, but that is likely do the ease of writing a script and sending the patient on their way.
For my part the loss of the use of my hands is serious and Dupuytren's has greatly limited the activities in which I engage as fatigue or hard use of my hands results in cramping and loss of flexibility.
Unfortunately the X-ray treatment of my hands was delayed by more than a year as I received bad advice first from my family doctor, Dr. Dawn Motyka, and then from a Stanford surgeon, Dr. Ronald Gemberling. Fortunately I did additional research on my own and learned about NA and XRT and Dr. Seegenschmiedt's work. My left hand had progressed further with Dupuytren's and the XRT was less successful than on my right hand at slowing the effects of the Dupuytren's disease.
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11/04/2009 19:05
cindy850
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11/04/2009 19:05
cindy850
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Re: No Treatment
I agree with you on the doctors because taking care of patients is just a business for them now. Somewhere out there we might be able to find doctors that know about this disease and can help but i live in Missouri and there is no one. The closest doctor for NA is Illinois. I'm sure if your fingers are in full contraction this would be a good thing but i have 6 fingers that all have nodules and i have no contraction yet. I would worry about spending all that money and it reactivate a few weeks later. What i would love to try is radiation but insurance does not pay for it. I am curious what is XRT? Is that radiation? What i don't understand either is some insurance companies don't pay for anything that has to do with this disease. My problem with my hands started about 5 or 6 months ago and i noticed last week that at night my hands get with tight and cramp up a lot. Its getting harder to do things because they have a mind of their own. If any doctors are out there reading on this forum you need to listen to us and try and help. Start by lowering your prices for people that need things done to their hands. We can't afford these extremely high prices and please don't tell us insurance companies will pay. Most of them will not and most of us now have no insurance. I know this is not cancer and i know we will not die from this and i would not wish cancer on anyone. WE JUST WANT ARE HANDS FIXED PLEASE HELP THATS ALL WE ARE ASKING FOR. IF YOU WERE IN ARE SPOT WOULDN'T YOU WANT TO BE ABLE TO USE YOUR HANDS AGAIN. AND WHY IS IT THAT OTHER COUNTRIES OFFER THE TREATMENTS FOR LESS MONEY? WE AS A COUNTRY ARE NON CARING ABOUT PEOPLE IN NEED. Sorry i got so upset but this is the way i feel and i know i am not alone. Take care everybody.
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11/05/2009 00:03
flojo
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11/05/2009 00:03
flojo
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Re: No Treatment
Have you contacted your insurance and asked for reconsidering covering RT? Others on this site have had success after fighting their insurance co. Mine was covered by Medicare and that is good documentation about the efficacy of RT for Dupuytren's.
Don't give up.
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