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Musician, 30, just diagnosed today :/
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05/06/2010 18:39
purplegem 
05/06/2010 18:39
purplegem 
Musician, 30, just diagnosed today :/

Hi,

I'm a 30 year old student and musician from the South of England and was diagnosed with Dupuytren's by my doctor just a couple of hours ago. Over the last couple of years my hands have become achey and get sore quickly when I've been typing essays and playing my flute. I noticed bumps in the palms a couple of months ago, and didn't think much of it until last week, when my mum told me she had been diagnosed. She has nodules measuring around 1cm on both palms beneath the ring finger, and I've noticed that I also have them in the same place, around 2-3mm at the moment. I can also see other small nodules in quite a few areas on both hands. My mum's hands have got a lot worse in the last 6 months (she first noticed the nodules 1 year ago) and are very painful. I've read that in younger people, the condition progresses a lot quicker - I'm really worried about this. It's also disheartening that radiation therapy is so hard to come by for this in the UK -my doctor refused to refer me until I could give her definite names of Dr.s likely to do it. I can't afford to pay for it in another country. Getting scared now because I write (heading towards academic career), compose music and play the flute, so mobility in my hands is essential if i want to continue with those things.

Is there anyone on the UK who has made any headway finding doctors who will try RT for this? Know of any clinical trials for the treatment that it might be possible to get in on?

Any help/advice/support much appreciated.

Gem

05/06/2010 19:31
jimh 
05/06/2010 19:31
jimh 
Re: Musician, 30, just diagnosed today :/

I'm 58 but developed Dupuytren's starting in my middle 30s. I have to question your diagnosis - do you or your mother have actual contractures, or just lumps (nodules)?


The signature symptom of Dupuytren's is a contracture - and the condition is normally not painful.

Edited 05/06/10 22:32

05/07/2010 00:37
Macman 
05/07/2010 00:37
Macman 
Re: Musician, 30, just diagnosed today :/

Hey Purplegem... I have contracture in both hands and can still play the sax..in fact have been teaching myself the bass guitar recently.. Your condition is simply a challenge .. Your dreams can still be realised and be rewarding with or without DC if you want them to happen badly enough.. Just like before but a little different.

I do hope you all the best.. You have started on a path that many walk..You however are not alone. Best wishes..Macman

05/07/2010 00:59
LubaM. 
05/07/2010 00:59
LubaM. 
Re: Musician, 30, just diagnosed today :/

jimh:
I'm 58 but developed Dupuytren's starting in my middle 30s. I have to question your diagnosis - do you or your mother have actual contractures, or just lumps (nodules)?


The signature symptom of Dupuytren's is a contracture - and the condition is normally not painful.
jimh,
sorry to disagree...I have been diagnosed with Dupuytrens in both hands and Ledderhose in one foot...My left hand is full of nodules, but no contracture. In my right hand I had a cord that contracted the pinkie finger (after NA the cord is gone).

So, there can be both nodules and/or contracture in Dups. I cannot comment about it being painful, because I have been lucky with no pain, just lots of itching and burning when the Dups. was active in my left hand. RT has stopped the progression in my left hand.

Edited 05/07/10 04:00

05/07/2010 02:19
flojo 
05/07/2010 02:19
flojo 
Re: Musician, 30, just diagnosed today :/

I have no family history of Dupuytren's Disease, but I have it. There were nodules in every quadrant of my right hand. I had itchiness, weakened grip and tightness across my palm and mild aching, but no real pain. Cords causing Stage I contracture developed, so I had NA to release the cords. About 3 months later, I had RT that reduced the nodules, stopped the itchiness, strengthened my grip and reduced the tightness. So far, it has stopped the progression.

I don't know anything about Ledderhose but what I have read on this website and hope never to experience it.

05/07/2010 07:48
purplegem 
05/07/2010 07:48
purplegem 
Re: Musician, 30, just diagnosed today :/

Thank you so much for your reply Macman, that does put my mind a little more at rest.
To the poster who questioned the diagnosis, my mum was misdiagnosed initially (about a year ago), then correctly 6 months ago, since which time the contracture has started in the ring finger of both hands.

Macman:
Hey Purplegem... I have contracture in both hands and can still play the sax..in fact have been teaching myself the bass guitar recently.. Your condition is simply a challenge .. Your dreams can still be realised and be rewarding with or without DC if you want them to happen badly enough.. Just like before but a little different.

I do hope you all the best.. You have started on a path that many walk..You however are not alone. Best wishes..Macman

05/07/2010 09:31
Legion 
05/07/2010 09:31
Legion 
Re: Musician, 30, just diagnosed today :/

I have had Dupuytrens since my earlr 30's and had six ops (all fasciectomoies) three on each hand.

However it has never really affected my ability to play the drums! (at least not for long)

05/07/2010 11:41
patandpaula 
05/07/2010 11:41
patandpaula 
Re: Musician, 30, just diagnosed today :/

Purple,
I have had Dupuytrens for almost two years now. The first year it was very painful to the point I couldn't sleep. But now the nodules just hurt a little occasionally, so I guess what I'm saying is everyone is affected differently and in my case the pain eventually went almost away. One of the nodules started making my little finger contact about a year ago, but some people never have contractions. I had RT two weeks ago with a Dr. in Oklahoma, but so far no change at all. No bad side effects but no good changes either.
Paula

05/07/2010 15:10
LubaM. 
05/07/2010 15:10
LubaM. 
Re: Musician, 30, just diagnosed today :/

Paula

Every case is different. With regards to RT the changes are gradual, but in my case they continued for about three months. I had multiple nodules on my left hand, a very small cord running along the index finger and my hand was tight, couldn't open it all the way, and I had constant burning and itching... the itching and burning stopped almost immediately after RT. Three months later, the nodules are smaller and not so hard, the small cord is gone, and I definitely have a wider span from thumb to pinkie, the hand doesn't feel tight.

Hope your hand continues to improve over the next few months.

Edited 05/07/10 18:12

05/07/2010 18:09
lori 
05/07/2010 18:09
lori 
Re: Musician, 30, just diagnosed today :/

Paula,

I did not see much improvement for the first few weeks. It has continued to improve since the last treatment. I have to sasy it has been stable since March. I saw the most improvment about 4-6 weeks after the 2nd treatment. My hand lost the tightness, nodule softened and the cord seemed to sink into my palm a little bit more. I would give it more time. I did not expect any improvment but was hoping to just put a stop to the progression. Improvement was a bonus.


Lori

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