Hi,

I posted some questions on this forum earlier and have found a lot of information on this site/forum, thanks for that.
I would like your advice (again) as I am struggling to make a desicion...

My story so far:

I was diagnosed with Dupuytren's (both hands) and Ledderhose (left foot) by Prof. Ilse Degreef from the University of Leuven (Belgium) earlier this year (end of april). At that moment there was no contraction or (visible) cords yet. Nodules yes. Prof Degreef told me to wait until contraction and then make an appointment for injections.

Now it's the end of august and in the last few days my hands are deteriorating. My pinkie & ring finger on the left hand are starting to contract (especially pinkie), although I can still fully stretch with a little effort. My right hand is acting funny and hurts (especially my index finger) and feels like it's going the same direction as the left one. I find it harder to tie my shoelaces or do the washing up and things slip out of my hands easier. I make more typing mistakes than usual. In both hands I can see cords now, although they are still quite faint. (By the way, all fingers are really stiff in the mornings, and my left pinkie is jerky, which gets better after a few minutes)

As I am 35 years old, have a family history of Dupuytren's, have both hands affected and my foot as well, I fear it might be an aggressive form. Prof Degreef told me she did not trust radiotherapy ('there's something fishy about it', she said).
But I read a lot of positive stories on the internet. As I live in Belgium, I would have to go to either Germany or the Netherlands. I am also worried about the money, because I don't have a lot of it, and my belgian insurance won't cover, unless I get some specialist to convince them.

! EXTRA NOTE: I just spoke to Dr Schmeets from the Catharina Hospital in Eindhoven, the Netherlands on the telephone; she was very helpful but told me they have made an agreement NOT to give radiotherapy to patients with Dup/Ledderhose under 50 years of age!!!!!!

I have to say I am not all that keen on radiotherapy myself. I really, really would rather not. But I do get panicky moments on which I think: AAAAAAARgh, I have to act NOW, or else I might get crippled for the rest of my life!
Or should I just trust Prof Degreef and go for injections?

What would you do?

Edited 08/22/13 12:02

Thanks Wolfgang,

I've just sent an e-mail to the clinic in Essen (this is a lot closer to me than Hamburg). So hopefully I'll get an answer soon and maybe I can make an appointment with them. I have to say though, that Dr Schmeets scared me even more by saying they don't treat patients under 50 years of age. I'd rather have contracted fingers than a tumor in 10 years time...I also read that radiotherapy can cause collateral damage to the rest of your hands. Have you noticed any of this?

Lina

Thanks Wolfgang,

I have made an appointment with Prof Seegenschmiedt for the 14th of september in Essen.

Lina.

Thanks Jolene, and good luck to you. Hopefully you will find a solution soon!

I also thought that RT in younger people be of higher risk. However when one adds up lifetime radiation exposure, RT only marginally adds to the cumulative total.

In discussing this with my doctor, his comment was, where someone of 35 depends on their hands to make a living (we were talking about a dentist), RT is clearly a good option as there is a good chance of retaining full function if treated early enough.

RT of both hands worked for me.