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Dupuytrens and Ledderhose - Basic questions
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06/13/2015 23:46
Rajput1 
06/13/2015 23:46
Rajput1 
Dupuytrens and Ledderhose - Basic questions

I am asking fellow sufferers the following questions:

1. How was your illness actually diagnosed? Just by examination, or by any form of testing?

For example, did anyone have an MRI, Ultrasound, Biopsy or any other test, to establish they had either or both illnesses?

2. Which type of doctor is actually managing your illness?

Is it your GP or do you have a specialist who keeps monitoring your condition?

3. Would you recommend people with either of these conditions stay with their GPs for ongoing care, or should they find a specialist to keep monitoring their illness? If so, what kind of specialist do you think is best?

Thank you in advance.
Rajput1

06/14/2015 16:16
mikes 
06/14/2015 16:16
mikes 
Re: Dupuytrens and Ledderhose - Basic questions

1. I self-diagnosed based upon an obvious contracture followed by Internet research.

2. I did have my self-diagnosis confirmed by my GP who while not overly knowledgeable about the disease, was aware of it and to his credit did not attempt to discourage me from pursuing "new" remedies - i.e NA at the time (2006).

3. My research led me to an avant-gard practitioner of NA who is a hand-surgeon (plastic surgeon) who performed NA. Since that time, I continue to "self-monitor".

06/15/2015 11:11
Rajput1 
06/15/2015 11:11
Rajput1 
Re: Dupuytrens and Ledderhose - Basic questions

Thanks Mike.

I have had the diagnosis confirmed by ultra sound. I'm not sure I feel confident that all nodules are being picked up by this method of testing.

I am currently handling my condition with my GP, but he seems to know much less than I do...

06/15/2015 12:40
missbetsy 
06/15/2015 12:40
missbetsy 
Re: Dupuytrens and Ledderhose - Basic questions

Initially I self-diagnosed my left hand. Happened to be at my GP for something else and showed her. She had never seen anything like it and felt they were ganglion cysts. I was pretty confident she was wrong but I didn't say anything. Dupuytrens was then confirmed by an orthopedic hand surgeon who did Xiaflex. It returned in less than 6 months with another angry nodule and contracted a bit more. At this point I am just monitoring it myself. I would definitely seek out a doctor that has some knowledge on it. There is a group on Facebook that can often suggest a name depending on your location.

06/17/2015 06:45
Pedro 
06/17/2015 06:45
Pedro 
Re: Dupuytrens and Ledderhose - Basic questions

A-1. Went to my G.P. with an aching little finger and obvious contracture of LH little finger - Diagnosed after cursory physical examination of the hands and simple Table-Top Test - No other Test's were carried out.

A-2. My G.P. - in reality, I monitor and manage the condition.

A3. Find a specialist - I am of the opinion that Dupuytren's is a condition that has and is indicative of other underlying causes - diagnosing the actual cause(s) is what would determine the best kind of specialist.

Treating the condition night have a generic approach but not so the underlying cause(s), these would vary from individual to individual.

In reality, I sincerely believe that the individual can, with better understanding their condition, better manage it themselves - if not treat and reverse the condition using effective homeopathic remedies.

On the Medical side, Unless the condition is already in the advanced stages of contracture, there is very little on offer treatment-wise but to monitor till it get's there - and then all that is on offer is medical intervention, the latest being Xiaflex injections

I feel that managing and reversing the actual condition is possible though easiest at the early stages and that while medical intervention can assist at the latter stages it should be limited and as least invasive as possible.

06/17/2015 12:58
Seph 
06/17/2015 12:58
Seph 

Re: Dupuytrens and Ledderhose - Basic questions

Rajput1; Most important to me is that I don't see this as an illness. To me its a condition like being short or tall. Its the good cancer. Its a pain in the A but not life threatening. Then again it doesn't go away so need to learn to live with it. A bit like short people have to get used to being short (poor souls). To answer your specific questions:

1. I had LD and DD for nearly 20 years before it was diagnosed and I was given a name for what I had. And I had it 30 years before I discovered there were lots of others with the condition. No MRI, Ultrasound, Biopsy or other test. Just bloody obvious. All I needed was to know what it was.

2. First diagnosed properly by a hand surgeon but that was after seeing multiple GP's, surgeons and a plastic surgeon. The one who first diagnosed on seeing my hands said "Take your shoes off and show me your feet". To me that was a miracle finding someone that knew what I had. Only one to monitor the condition is you. Then again why monitor. When it causes a problem get treatment. If it is not stopping you doing what you want to do leave it alone.

3. The specialist is you.

My view is "Go slow. Only treat when you have". If you can hold a tennis racket and you aren't knocking over wine glasses then you are not ready for treatment.

06/17/2015 23:37
JohnG 
06/17/2015 23:37
JohnG 
Re: Dupuytrens and Ledderhose - Basic questions

My story is one of doing my own research and taking ownership. Even though I'm not a physician.

1. How was your illness actually diagnosed? Just by examination, or by any form of testing?

I self diagnosed. My older brother had DD before me, and he confirmed the nodules by feeling them. I conferred with a hand surgeon who confirmed the diagnosis. I then saw a podiatrist who confirmed my suspicion of Ledderhose.

2. Which type of doctor is actually managing your illness?

Is it your GP or do you have a specialist who keeps monitoring your condition?


I monitor it.

My GP doesn't know much of anything, except two facts: DD can be treated by a small surgery, and it can flare up due to heavy alcohol consumption. My podiatrist didn't know much about treatment either, except that he could refer me to a surgeon if I really wanted it.

When the time comes, I will refer myself to a specialist again.

3. Would you recommend people with either of these conditions stay with their GPs for ongoing care, or should they find a specialist to keep monitoring their illness? If so, what kind of specialist do you think is best?


As I mentioned, my GP doesn't know much. I referred myself to a radiation oncologist for electron-beam therapy. He had never treated DD, but he had heard of it being done, and he was glad that I brought with me several medical journal articles by the German groups describing their protocol. He had never palpated a hand, I believe. He suggested that I see his friend the hand surgeon, who knew nothing except open surgery, but was happy to palpate my hand and use an ink pen to draw an outline of a proposed treatment area, based on an example photo I presented from Prof. S's clinic.

Overall, this situation is different from that of a cancer patient, who can easily find a comprehensive clinic that has all types of specialists including surgeons, radiation oncologists, and internal medicine doctors who prescribe chemotherapy. A cancer patient could present herself to such a clinic almost anywhere and expect to get competent and comprehensive treatment.

Here's the key fact: unlike cancer, DD and Ledderhose do not have a comprehensive clinic in your home town. Nor do they have one anywhere else, as far as I know. There are specialists here and there, especially hand surgeons, but they are just isolated specialists who are not part of a comprehensive clinic that can diagnose, select an appropriate treatment from a wide array of strategies, and then monitor it. It would be great if such a comprehensive clinic existed, as it does for cancer just about in every city, but it doesn't.

Edited 06/18/15 02:46

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