I posted on here about a month ago, I'm 24 and am certain I have Dupuytrens, (I had a GP appointment booked to confirm this but it was cancelled so have another one in a couple of weeks). I have signs in both hands but my concern at the moment is my left, I have large soft bump with a pit at the top of it on the palm near the thumb and index finger, that was my first sign, I now seem to have cords going up my palm towards each finger on my hand! I find it hard to tell but I think there seem to be some small nodules forming on those cords aswell. I am getting a twitching feeling in my palm and alot of pain in my index finger, the cord in my palm that stretches furthest upwards is under the index finger, does this mean I am close to getting contraction of my index finger?

After my original post I was advised to stay patient and possibly observe for 6 months before having radiotherapy, my concern is that this could have progressed alot more by then possibly past the point where RT would be effective. I have been keeping a diary as advised. Any further advice would be greatly appreciated.

Thanks

You need to get an accurate diagnosis. There is still a possibility that what you are dealing with is NOT DD. Reasons to speculate other reasons for your hand troubles... it’s not in your family, you are very young, you have pain... these are the reasons the hand surgeon told me that I do not have DD, among others, despite having been diagnosed by two GPs, an ultrasound, and an internist. I had a nodule, confirmed by ultrasound as a DD nodule, I had pain, I had thick bands pulling fingers in, skin changes, and swelling, and it was “progressing rapidly”, so fast that two GP’s wanted me to file for disability as I am a professional musician and they said I wouldn’t work again. But DD is not in my family, and I’m 32. Hand surgeon called it palmar fibrosis, and if you search for it, both google or even in the medical journals, there is nothing, you will just be directed to palmar fibromatosis, which is another name for DD... but there are other disorders of the hand that cause nodules and bands to form that are NOT DD.

My condition will not develop a true contracture. It can be treated with therapy. You need to get a diagnosis, and I would not depend on a GP or ultrasound... I suggest seeing a hand surgeon or DD specialist. And line up radiation therapy ASAP, so you are prepared, but don’t self-diagnose using the Internet! And don’t settle for a GP or ultrasound! See a hand surgeon who has worked with dupuytrens and get an accurate diagnosis! I was making radiation appointments, and had I not seen the surgeon, I would have had radiation unnecessarily.

Do you use your hands a lot?

A firm diagnosis is the first step to a treatment. Treatment without firm diagnosis would be useless if not dangerous. See also "First exclude other causes" on https://www.dupuytren-online.info/dupuyt..._therapies.html .

Wolfgang

msj94:

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lisaanne:

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lisaanne:

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You need to get an accurate diagnosis. There is still a possibility that what you are dealing with is NOT DD. Reasons to speculate other reasons for your hand troubles... it’s not in your family, you are very young, you have pain... these are the reasons the hand surgeon told me that I do not have DD, among others, despite having been diagnosed by two GPs, an ultrasound, and an internist. I had a nodule, confirmed by ultrasound as a DD nodule, I had pain, I had thick bands pulling fingers in, skin changes, and swelling, and it was “progressing rapidly”, so fast that two GP’s wanted me to file for disability as I am a professional musician and they said I wouldn’t work again. But DD is not in my family, and I’m 32. Hand surgeon called it palmar fibrosis, and if you search for it, both google or even in the medical journals, there is nothing, you will just be directed to palmar fibromatosis, which is another name for DD... but there are other disorders of the hand that cause nodules and bands to form that are NOT DD.

My condition will not develop a true contracture. It can be treated with therapy. You need to get a diagnosis, and I would not depend on a GP or ultrasound... I suggest seeing a hand surgeon or DD specialist. And line up radiation therapy ASAP, so you are prepared, but don’t self-diagnose using the Internet! And don’t settle for a GP or ultrasound! See a hand surgeon who has worked with dupuytrens and get an accurate diagnosis! I was making radiation appointments, and had I not seen the surgeon, I would have had radiation unnecessarily.

Do you use your hands a lot?

Other reasons to be skeptical of DD... DD nodules rarely form under the index finger. Rarely does the index finger contract. Rarely does it progress that fast. Rarely is the whole hand involved, with thick bands extending to all fingers (this is what I also had). The surgeon explained to me that there is a lot of misinformation about DD and palmar fibrosis... as they have been lumping the two disorders into the same category. And as a result, it’s very common that GPs assume every nodule is a DD nodule... but you can form nodules and thick bands in the hand that do not contract. Inflammatory responses can cause that to happen, and it can be reversed.

See a hand surgeon or DD specialist.

Many thanks for all the replies.

Lisaanne - I'm hoping that my condition is the same as yours as it sounds like a much better outcome! I am booked to see the GP and I think you're right I'm going to find a DD specialist to have a look and see what they think. The pain is pretty infrequent I don't get it that often but it's quite bad when I do get it. I'm concerned also because I've been getting pain in the soles of my feet too so am hoping that's not anything to do with Ledderhose. I don't really use my hands for anything too physically demanding, I type alot for work but wouldn't have thought that would have any effect. How's your condition now? Have you had therapy that has worked and improved the situation?

Edited 04/01/19 04:26