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Concerned that DD is progressing quickly, advice needed
 1
 1
03/31/19 12:55
msj94 
03/31/19 12:55
msj94 
Concerned that DD is progressing quickly, advice needed

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

03/31/19 13:14
spanishbuddha 

Administrator

03/31/19 13:14
spanishbuddha 

Administrator

Re: Concerned that DD is progressing quickly, advice needed

You do need to get a diagnosis confirmed. In the meantime, since you have been logging symptoms decide where to potentially have RT, make contact, get the plans in place. There’s a list of Radiologists performing RT on the NHS on the BDS website, one in Exeter if still active, also the private clinics are listed there. But confirm or otherwise the diagnosis.

Edited 03/31/19 13:15

03/31/19 18:48
lisaanne 
03/31/19 18:48
lisaanne 
Re: Concerned that DD is progressing quickly, advice needed

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?

03/31/19 19:06
lisaanne 
03/31/19 19:06
lisaanne 
Re: Concerned that DD is progressing quickly, advice needed

lisaanne:
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.

03/31/19 19:31
wach 

Administrator

03/31/19 19:31
wach 

Administrator

Re: Concerned that DD is progressing quickly, advice needed

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

03/31/19 22:06
msj94 
03/31/19 22:06
msj94 
Re: Concerned that DD is progressing quickly, advice needed

lisaanne:
lisaanne:
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?

04/01/19 03:30
lisaanne 
04/01/19 03:30
lisaanne 
Re: Concerned that DD is progressing quickly, advice needed

msj94:
lisaanne:
lisaanne:
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?

Hello!

I think hand surgeons are also the ones who are highly suggested for getting an accurate diagnosis... mine said that he has seen thousands of DD hands, managed their case over many years and operated lots... hand surgeons know what they are looking for. I had a hard time finding someone who specializes in DD... there is someone in Ontario... but couldn't find anyone near me here in Vancouver. But there are lots of hands surgeons out there.
From what the surgeon told me... pain rarely gets severe in Dupuytren's... though it is possible to have DD, on top of other disorders that cause severe pain.. generally if you are experiencing serious pain, that is a symptom of inflammation, not DD.
I am a musician.. what caused my palmar fibrosis was playing lots of piano, combined with a change in my hormones caused by going on birth control... he also said that when you are on oral contraceptive you experience lots of fluid retention, which can interfere with signaling from your hands to your brain, resulting in bad/sloppy technique, resulting in inflammation. The surgeon explained that palmar fibrosis is related to repetitive motion strain. I think typing lots for work could have an influence. Palmar fibrosis is also related to underlying health issues... such as rheumatological disorders, alcoholism, diabetes, etc... basically... anything that can encourage inflammation combined with repetitive motion strain can result in palmar fibrosis.
I took three weeks off work, rested my hands, made lots of anti-inflammatory type life-style choices. The swelling and pain is almost all gone. A hand therapist showed me some stretching that has helped my thumbs to release, but they are not 100% yet. I will see another specialist in two weeks, the surgeon recommended, to help "retrain more efficient signaling".

Edited 04/01/19 04:26

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