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need some help from others
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11/16/06 03:53
lookforanswer 
11/16/06 03:53
lookforanswer 
need some help from others

I was recently told that I have Dupuytren's--I only have knuckle pads (on several fingers) and some painful nodules on the dorsal (non palm) side of my hand. No other symptoms. Have others heard of these symptoms being the only symptoms early on in the disease? No nodules on my palms and definitely no contractures. This sounds so atypical that I am doubting the diagnosis though it was made by a very prominent and competent hand specialist. I am 41 and female.

11/16/06 15:04
Issleib 
11/16/06 15:04
Issleib 
Re: need some help from others

You can have knuckle pads from some of the autoimmune diseases like dermatomyositus. You might ask your internist about some further work up. A second opinion is never a bad idea if your concerned.

That said I have nodules over my kneecaps. and I can't find that described anywhere.

11/17/06 15:35
wach 

Administrator

11/17/06 15:35
wach 

Administrator

Re: need some help from others

We all kow that Internet diagnosis is impossible but here are my five cents: knuckle pads are often connected with Dupuytren but they are not Dupuytren. I personally have never heard of Dupuytren without nodules or cords on the palm side of the hand. So my personal guess would be that the nodules on the dorsal side might be some fibromatosis or have completely different reasons. Without criticizing your doctor who is, as you mention, an expert I still agree with Issleib that a 2nd opinion might not hurt. Just to be on the safe side.

Wolfgang

Quote:



I was recently told that I have Dupuytren's--I only have knuckle pads (on several fingers) and some painful nodules on the dorsal (non palm) side of my hand. No other symptoms. Have others heard of these symptoms being the only symptoms early on in the disease? No nodules on my palms and definitely no contractures. This sounds so atypical that I am doubting the diagnosis though it was made by a very prominent and competent hand specialist. I am 41 and female.


11/22/06 17:06
ellenpao 
11/22/06 17:06
ellenpao 
Re: need some help from others

I too started with only PIP nodes, so it's possible. I've had 4 NA procedures - 2 on right hand, 2 on left - 2 with Eaton in FL, 2 with Pess in NJ, and HIGHLY recommend the procedure.

I did not develop a palmar cord until about 10 years after the first PIP node appeared.

12/31/06 15:03
Zippy

not registered

12/31/06 15:03
Zippy

not registered

Re: need some help from others

I am female 62 and my disease started when I was eight years of age. It started with painful swelling in different knuckles over a long period of time - these became knuckle pads and eventually by my mid teens every knuckle was involved. During my 30's nodules appeared in the palms of my hands but no obvious contracture. My mother's family all had Dupuytren so I was aware of what might happen. In my late 30's I developed nodules in my feet and had to have an operation to relieve the pressure and correct my foot position. I have always done exercises for my fingers and feet. I actually found typing a good evercise for the fingers to keep them flexed and nimble. During my 40's the curvature started in my right hand and my small finger began to turn in. When it was bent double I had a fasciotomy done to straighten it but within one month it was back to the bent position. I have had long periods of remission followed by rapid deterioration. Now in my 60's I have had my small finger on my right hand removed which is a great relief as it was causing accidents and was continually being injured. I am at present awaiting a prosthetic finger. I have also had a fasciotomy on the ring finger of my right hand although this has not been very successful - due I think to my disease being so aggressive. My left hand is affected with the middle and ring fingers being dragged down to the palm. All this sounds awful but in fact at no time has it stopped my from doing all the things I enjoy. I sew, knit, do craft, care for my dog and two cats. I also have a pony for the grandchildren and am involved in Riding for the Disabled and can muck out a stable as well as anyone! Never give up - enjoy the challenge of finding new ways of doing the things you enjoy.

01/01/07 16:16
Wolfgang

not registered

01/01/07 16:16
Wolfgang

not registered

Re: need some help from others

Great post, Zippy, thank you!

Quote:



... All this sounds awful but in fact at no time has it stopped my from doing all the things I enjoy. I sew, knit, do craft, care for my dog and two cats. I also have a pony for the grandchildren and am involved in Riding for the Disabled and can muck out a stable as well as anyone! Never give up - enjoy the challenge of finding new ways of doing the things you enjoy.



01/02/07 19:13
Randy_H 

Moderator

01/02/07 19:13
Randy_H 

Moderator

lookforanswer:

While it would be nice to have a confirmation of the diagnosis, the bottom line is that there is really nothing to do at the moment if you do have Dups. Until you have a contraction or nodules in the palm there is no medical intervention available or even needed. What is more, you have good reason to believe that you may never develop the disease to the point of it becoming an issue for you.

It gets back to not worrying about those things we can't control. It's hard to do but frankly I'd *love* to be in your position and have your chances, and if I was, I wouldn't worry a bit. If you need help later on, come on back and read up on the Latest and Greatest.

All the Best

Randy

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grandchildren   continually   symptoms   Dupuytren   confirmation   knuckle   intervention   criticizing   fibromatosis   nodules   specialist   disease   contraction   dermatomyositus   deterioration   lookforanswer   fasciotomy   diagnosis   contracture   contractures