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Newly diagnosed
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10/24/2012 05:24
Clarky75 
10/24/2012 05:24
Clarky75 
Re: Newly diagnosed

Do any Aussies on here know of anyone who specialists in dupuytrens as I would like to discuss with someone before investigating my overseas options.

10/24/2012 07:13
GaryBall 
10/24/2012 07:13
GaryBall 
Re: Newly diagnosed

Hi clarky...

I could nt agree with seph more.....I am a kiwi......big on sports and enjoy being active......for me......Prof Seegeschmeidt In Hamburg was my first option.....his contact details are on the site......a practitioner that knows the condition and related diseases like the back of his hand....he will ask for photos and advise you what to do.....

My ledderhose ground me almost to a halt last year....I a m now back playing tennis to inter club standard......and the progession stopped in it's tracks....

There are too many stories around the globe of practitioners being out of touch with this condition......hopefully that will change in the future.....until then ....see the best people who know the disease.....

Good luck..

Gazza

10/24/2012 07:20
spanishbuddha 

Administrator

10/24/2012 07:20
spanishbuddha 

Administrator

Re: Newly diagnosed

Welcome to the forum. RT is only effective during the proliferation phase of fibroblast growth. In other words when the disease is in an active phase. If the disease is dormant, or just very slow in developing then RT is not really recommended at all. Then the advice of wait and see makes sense whether you like it or not, since RT is (mostly) a one off chance of treatment so you need to do it only if or when appropriate.

The Professor in Germany uses a scoring system to determine, upon examination and discussion of history, whether to proceed with RT or not. So you need to do more homework before presenting to any radiologist with a DD nodule and ask for RT.

For example in my cases I kept a log of symptoms (pain, tingles, aches, growth, skin blanch) with photos, and hand span measurements over several months. That way I had objective data to show the Doctor that my condition was actively progressing (albeit quite slowly). I had one hand treated with RT and the other, despite nodules, remains untreated as it was/is dormant. So I recommend you start that log too, whilst continuing to check out your options for treatment and find out more about this condition.

As callie says looks after your hands, gloves for sports of course, but maybe also for other activities you would not have considered before (examples gardening, cooking, carrying, driving, DIY).

Best wishes.

10/24/2012 07:46
Clarky75 
10/24/2012 07:46
Clarky75 
Re: Newly diagnosed

Thanks Gary for your advice I seen the professors details and read up seems like he is the go to guy will definitely keep that option available.

Spanish, thanks for your advice, definitely wise advice and I will defiinitely keep that log while I continue to research and watch and wait. That's definitely wise advice.

Thanks so much for your advice.

10/24/2012 12:59
switcombe 
10/24/2012 12:59
switcombe 
Re: Newly diagnosed

I went to Germany for RT - as I wanted a doctor with many years of experience. Had my Dupuytren's been slow-growing, I would have waited; but in my case I feel that I waited a little too long. Though I don't have any finger contractions, I do have a cord in my thumb web that diminishes my hand span. I may have NA for that, but I hesitate to do so for fear of reactivating the disease.

10/24/2012 19:07
Clarky75 
10/24/2012 19:07
Clarky75 
Re: Newly diagnosed

Thanks Switcombe. Sorry for my ignorance on here as this is all new to me as my doctor gave me the watch and wait approach. What's considered fast growing and is there something that I should look out for. I assume a nodule that grows bigger or if you get more that's a sign it's progressing. What is considered fast progression is it month or years just trying to get an idea of when or how quickly I should act. Obviously being diagnosed yesterday and only noticing this nodule 2 days ago it's all very new. Nodule could have been there a while but I never noticed it

Thanks again to all.

10/25/2012 00:21
switcombe 
10/25/2012 00:21
switcombe 
Re: Newly diagnosed

In my case, over a period of about 7 months, I noticed changes weekly - more nodes, growth of the nodes, itching, stinging sensation at times, and aching now and then.

10/25/2012 13:11
lori 
10/25/2012 13:11
lori 
Re: Newly diagnosed

clarky75,

Fast for me was going from a sore spot to the beginnings of a cord in about 6 months. I took pictures once a week and kept a log of the changes in my hand on a daily basis. I did my own self examination by seeing if grasping the same glass once a week was more difficult, more pain, how long could I work on the computer before my hand felt like it was tightening, etc. I set up my own program for diagnosis as to what areas I was having problems in and kept that journal. I decided to do this after not being able to remember whether the nodule looked bigger one week and then I could not remember if I was having a problem holding a pencil the week before. I realized how the days were running together.

How fast is subjective. I felt like mine hand was changing before my eyes. As an example if my hand had not changed in a month I might have said it was changing but not aggressively. I did not like the speed or the way my hand was changing. From my perspective my DD was already interfering in my work and I was having real difficulties. I felt like if it did not stop I would soon be unable to type and work would become as issue. Being self employed I do not have workers comp or disability. I determined "fast" for me to be weekly changes.

Hope this helps,

Lori

Edited 10/25/12 16:13

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