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06/30/2011 03:35
aksg 
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06/30/2011 03:35
aksg
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Re: New to this
I am also new to this. Does anyone know of a medical professional in the Dallas-Ft. Worth Texas area who knows about Ledderhose.
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07/03/2011 13:30
Christl 
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07/03/2011 13:30
Christl
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Re: New to this
Hello aksg,
Welcome to the club. There is lots of information on this site. Nice, helpful people on this site as well. It all is a bit scary at first. I have the disease in both hands and feet. Lucky me. I read all I could and made the decision to take a "Radiation Vacation" in Germany. I will start radiation treatment in September with my hands, my feet have to wait, seems all has to be active. How big are your nodules on your feet? Read all you can and make a plan of action.
I first went to a podiatrist. Waste of time and money. As I suspected, I knew more than he did. Of course his course of action was to wait and do surgery.
Take care,
Christl
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07/03/2011 15:40
aksg
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07/03/2011 15:40
aksg
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Re: New to this
Hi Christi
The nodules are smaller than pea size right now. Most of the time they are not painful, but about two weeks ago, they were bigger and very painful. I have tried to rest my feet as much as possible and they smaller now, but my feet are still hurting in other places. I think it might all be connected.
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09/05/2011 13:54
Christl
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09/05/2011 13:54
Christl
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Re: New to this
Well, from new to pro. I am on my way to Germany for radiation treatment -on both hands -. Thanks to this site I can take action and don't have to sit and wait until surgery is the only option. My feet have nodule, but they don't bother me, so not sure if radiation should be done yet.
Will report about my experience.
Till then...
Christl
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09/05/2011 14:19
LubaM. 
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09/05/2011 14:19
LubaM.
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Re: New to this
Christl:
Well, from new to pro. I am on my way to Germany for radiation treatment -on both hands -. Thanks to this site I can take action and don't have to sit and wait until surgery is the only option. My feet have nodule, but they don't bother me, so not sure if radiation should be done yet.
Will report about my experience.
Till then...
Christl
Good luck with your radiation treatment...and if you're going to Germany, from what I've read on this site, you are going to someone with so much experience, it should work out great. I live in Southern CA and had radiation for my left hand and left foot with Dr. Tripuraneni at Scripps Hospital in La Jolla, in November 2009. The DD and LD has been in remission since then, and I personally think radiation for early stages of the disease is the way to go.
I had multiple nodules on left hand and a tiny cord running along the index finger to the PIP joint. On the left foot I had two hard marble size nodules. The nodules on foot are almost gone, on the hand the nodules are much smaller, softer and the small cord is gone too. There are new nodules on the hand, but they are definitely outside the radiated areas, so my radiation results after almost two years, are very satisfactory.
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09/08/2011 03:33
flojo
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09/08/2011 03:33
flojo
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Re: New to this
Quote:
Re: New to this
Well, from new to pro. I am on my way to Germany for radiation treatment -on both hands -. Thanks to this site I can take action and don't have to sit and wait until surgery is the only option. My feet have nodule, but they don't bother me, so not sure if radiation should be done yet.
Will report about my experience.
Till then...
Christl
Good for you, Christi!!! We have to take charge of our own medical situations!
I believe you are doing the best that is available for you at this point in the disease. RT for early, active Dups has worked for me and others. Just don't expect to get your hands or feet back to what they were before Dups. Just like anything else, we can't turn the clock back.
Flora
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09/08/2011 12:57
Christl
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09/08/2011 12:57
Christl
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Re: New to this
Thanks Flojo and LubaM.
Will report on my experience... till then
Christl
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09/09/2011 10:35
Cyclist
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09/09/2011 10:35
Cyclist
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Re: New to this
Good luck Christl and enjoy Hamburg
Di
Christl:
Thanks Flojo and LubaM.
Will report on my experience... till then
Christl
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09/09/2011 12:22
Penny 
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09/09/2011 12:22
Penny
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Re: New to this
I am headed to Hamburg tomorrow. I will report back on my results also, my feet are progressing rapidly, so I am praying for them to stop and for the best possible outcome.
Thanks to all you who encourage and advise different treatment. Am looking forward to meeting Professor Seegenschmiedt hearing his assessment and having RA.
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09/15/2011 10:19
Cyclist
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09/15/2011 10:19
Cyclist
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Re: New to this
Good luck Penny
Keep us posted as to your Hamburg experience with Prof S and your recovery
Di
Penny:
I am headed to Hamburg tomorrow. I will report back on my results also, my feet are progressing rapidly, so I am praying for them to stop and for the best possible outcome.
Thanks to all you who encourage and advise different treatment. Am looking forward to meeting Professor Seegenschmiedt hearing his assessment and having RA.
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