| Hello new member from USA with some questions and concerns! Appreciate any help! |
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03/25/2016 09:26
wach  Administrator
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03/25/2016 09:26
wach Administrator
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Hi Vickie,
just two minor corrections (hope you don't mind!):
- Prof. Seegenschmiedt is not member of any Facebook group nor does he answer questions on Facebook. He could be held accountable for giving medical advice on the Internet and he is carefully avoiding that. Maybe somebody is trolling as "Dr.S" but that would be fraud, should be marked as such and those posts ought to be deleted. Unfortunately Facebook groups are often not moderated and anyone can post anything.
- on this website, the official website of the International Dupuytren Society, we are providing structured and regularly updated information on all aspects of Dupuytren and Ledderhose disease and their treatments. Our website is supported by a scientific advisory board with highly skilled experts on Dupuytren's http://www.dupuytren-online.info/dupuytr...sory_board.html, and honestly, we believe that the information on this website is more complete, more reliable, and better structured than anything that you can find on Facebook.
Wishing you success with your on-going Treatment!
Wolfgang
vicmc:
... IF YOU REALLY WANT ALL THE INFO YOU CAN READ GET ON FACEBOOK. ... DART, DEALS WITH ALL THE ASPECTS OF RADIATION THERAPY. DDSG, IS A GROUP THAT DISCUSSES ALL TREATMENTS, THEY HAVE DR.S IN THE GROUP THAT ANSWER QUESTIONS. DUPUYTRENS CONTRACTURE GROUP. ALL TOTALLING OVER ONE THOUSAND MEMBERS. WHEN I WENT TO THE DR.S I FELT I KNEW MORE THAN THEY DID. GOOD LUCK TO YOU. KNOWLEDGE IS POWER. VICKIE
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03/25/2016 09:40
Stefan_K. 
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03/25/2016 09:40
Stefan_K.
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
I agree that there is no more objective, factual source of information about DD and LH on the internet than this website.
My reading of
Quote:
THEY HAVE DR.S IN THE GROUP THAT ANSWER QUESTIONS
is "They have doctors in that group that answer questions."
Stef
[Born 1962, DD diagnosed 2006, contracture and NA/PNF 2014, RT 2015.Wearing night splint glove.]
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03/25/2016 10:09
wach Administrator
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03/25/2016 10:09
wach Administrator
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Thank you for clarifying, Stefan!
Stefan_K.:
I agree that there is no more objective, factual source of information about DD and LH on the internet than this website.
My reading of
Quote:
THEY HAVE DR.S IN THE GROUP THAT ANSWER QUESTIONS
is "They have doctors in that group that answer questions."
Stef
[Born 1962, DD diagnosed 2006, contracture and NA/PNF 2014, RT 2015.Wearing night splint glove.]
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03/25/2016 16:30
vicmc 
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03/25/2016 16:30
vicmc
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Sorry Wach, I didn't mean to offend. Stefan was correct about DRs/ doctors. I belong to all the groups I mentioned, it helps me to understand this disease by reading what others have tried, good and bad. I thought it might help others as well.
Edited 03/25/16 18:30
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03/25/2016 22:24
atedio 
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03/25/2016 22:24
atedio
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Hi Rhei,
The ziaflex website has a list of doctors that are registered to inject ziaflex. And if you call the ziaflex helpline they can also verify if the doctor has experience with ziaflex. Sorry for your condition. Hope this helps.
tk
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03/26/2016 02:14
Rhei
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03/26/2016 02:14
Rhei
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
atedio:
Hi Rhei,
The ziaflex website has a list of doctors that are registered to inject ziaflex. And if you call the ziaflex helpline they can also verify if the doctor has experience with ziaflex. Sorry for your condition. Hope this helps.
tk
Thanks
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03/31/2016 06:59
Peacefulbird
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03/31/2016 06:59
Peacefulbird
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Hello, and welcome to this forum. I too am new, and my DD is only at the initial nodule stage, although it's only been a couple of months since the first one developed, and now there are 3 of them. I too have moderate pain or discomfort all the time, which sometimes keeps me awake. When I told the orthopedic surgeon (upper extremities specialist) this, he recommended, and then gave me, a steroid shot. It did help quite a bit. I sympathize with you about the limits this disease places on your passion (me too). Hope both of us can find some of the calm and coping skills that the administrators and others active on this forum seem to have.
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03/31/2016 07:00
Peacefulbird
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03/31/2016 07:00
Peacefulbird
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Re: Hello new member from USA with some questions and concerns! Appreciate any help!
Peacefulbird:
Hello Rhei, and welcome to this forum. I too am new. My DD is only at the initial nodule stage, although it's only been a couple of months since the first nodule developed, and now there are 3 of them, which indicates to me it's in an active stage right now. I too have moderate pain or discomfort all the time, which sometimes keeps me awake. When I told the orthopedic surgeon (upper extremities specialist) this, he recommended, and then gave me, a steroid shot. It did help quite a bit. I sympathize with you about the limits this disease places on your passion (me too). Hope both of us can find some of the calm and coping skills that the administrators and others active on this forum seem to have. Good luck finding a Dr. you can trust.
Edited 03/31/16 10:02
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