Hi everybody,

I posted some questions on this forum about a month ago, and got many kind replies. So I thought i'd give you a little update

I went to see dr Ilse Degreef yesterday in Leuven (thanks Wolfgang, for the tip! Luckily I was able to get an appointment on a short term!). Unfortunately, she confirmed it is Dupuytren (the diffuse form, which Tusk already suggested) and Ledderhose on my foot.

She is against radiotherapy. According to her not enough research has been done and side effects could be harmful.
She asked me to keep her up to date and she will start treatment (injections, most likely) as soon as I can't stretch my fingers anymore. She thought I was 'an interesting case' haha!

In the meantime, I'm getting more and more little nodules in both palms of my hands and also some knuckle pads.
No cords so far!

I have to go and see a reumatologist as well, to get a full check up.

So well, I just have to keep fingers crossed & hope that things will not worsen too soon!

Thanks all a lot for your advice & kind replies! All the best wishes for all of you!

Lina

Hmmm. I know she is a highly qualified hand surgeon with a lot of experience with DD but at the end of the day, her logic against the use of RT to treat DD sounds like 95% of the hand surgeons. I had a German hand surgeon, who practices in Alabama, tell me point blank, "Do not get radiation treatment, it will give you cancer." Personally, after getting RT, and reading this board for over 3 years, I would advise you to try and find a way to get RT. If that is not totally successful you still have the all the other options available.

Of course you will have to make up your own mind, considering the advice of your doctor, and others can jump in here, but there has been a lot written about side effects of RT and all the speculation that goes with it and she is right that not enough is known but I haven't seen anything to indicate RT would complicate later surgery if it was needed. Everything is anecdotal. There is plenty of medical literature to show the cancer risk from RT is practically nil. I maintain that there is no real downside to having RT, other than the cost of course.

I have very aggressive DD (diathesis) in every finger and thumb but I only have contracture in one little finger. I don't think RT stopped everything for me but it did slow things down, it did "kill" some nodules and three years later I still haven't had any other intervention so far. I am glad I had it.

Best wishes Lina

Thanks for your responses...I was half expecting some protest as I've read quite a few positive comments on RT on this forum. It makes a bit nervous though, I have to admit. At the moment I still don't really believe that I have DD and LH, even though I went to see a specialist. I see some lumps in both hands and some thickening at the knuckles, and especially my left hand is 'funny' and maybe even a bit painful, but I can still stretch all my fingers and do practically everything with my hands. And there are no cords. So it seems so radical somehow to start radiation now, so unreal. I feel like saying: 'well, let's wait and see what happens first, shall we?' But I know that is maybe naive and stupid.

Sigh.

And my GP (I went to see another one than usual, as I had an urgent & mysterious infection on my leg two weeks ago) was quite positive that I have Reumatoid Artritis. I was very shocked she said that, I have to say. It seems a bit premature. On the other hand, she is a GP with a lot of experience. So she urged me to make an appointment with a reumatologist, which I did - but unfortunately that's not until the 8th july...

Sigh again.

Hi Lina. I hope you find that you don't have DD or LD or RA. When I started seeking a diagnosis I had no cords and no nodules on my palms. Just one big knucklepad on my index finger RH and some deformation. Within a year I developed another, even bigger knucklepad on my middle finger LH. The first rheumatologist told me to take glucosamine which may have caused the second knucklepad, who knows. The orthopedic doctor suggested another rheumatologist. He ordered blood work and xrays, both normal so RA was ruled out. Next, ultrasound, which was inconclusive. He finally sent me to a hand surgeon for a biopsy thinking it might be pre-rheumatoid nodules. She took one look and said Dupuytrens. Honestly, as bad as my DD is, I'm so thankful it wasn't RA. July seems a long way off but it'll be here before you know it. Good luck.

Thanks all for your comments.. I will just wait a bit for now and see what the rheumatologist says.
I really appreciate all your replies & information. It helps!