G'day folks,
Just wanted to introduce myself, (even as I type that, I know that's not entirely true.)

Firstly, let me say how much I appreciate the effort people went into for creating this site.
As all of you know, what we are going through is rough.

My name is Adam, I'm 40 years old and have suffered from both LD and DL for 8 years now I guess.
And like many of you, I found this site while trying to source information. To be completely honest, I only signed up on this site for support. I know that sounds selfish, but how many of us can honestly say people around them understand what we are going through?

Tonight, I am really down. Let me try to explain.

For the first 4 years I had LD I was misdiagnosed as having 'Ganglions', my GP basically just wrote me a certificate of illness when I was unable to attend work and that's pretty much all he did.

A few years ago however, I switched GP's and he suspected what he saw straight away as being Ledderhose disease. He immediately arranged a specialists appointment for me and a few weeks later I was sitting in an Orthopaedic Surgeons office. He took one look at my feet and said "Plantar Fibromatosis" then "Show me your hands".

What I had taken for calluses he informed me was Dupuytrens.

Unfortunately for me, as I had been misdiagnosed for so long, Radiation therapy, Cryotherapy etc were not a viable option.
For years, I would wake in the middle of the night screaming as my feet involuntarily contracted (clawed). I eventually had to resign from my employment because I could not fulfil my duties. So under his advisement we tried to excise the tumours.

I admit, he was honest from the start and told me the chances of recurrence were high, and that he had the most success with completely removing the foot's fascia in conjunction with skin graphs.
But Wow...

So I elected for him to try and just excise the tumours.

3 Operations later... I'm in worse shape than ever. The Tumours grew back in weeks of every attempt to remove them. Twice the size, just as painful if not more so and with the added bonus of nerve damage in my left foot, so now I have loss of sensation in the ball of my foot and 2 of my toes. It was hard enough walking at the best of times without my foot trying to compensate for toes it no longer feels.

So today, I scoured the net for over 8 hours trying to find a treatment I could speak to my Specialist about during an appointment 3 weeks from now.

But all day all I could find was stories of people giving up, of how little Doctors know about these diseases.
And then I found this site.

Thanks, to everyone here and the effort they have put into this site. If not for the information and support found here, I may very well have been ready to give up myself.

Good luck to us all.

Edited 07/07/14 03:00

spanishbuddha:

---

Welcome to the forum Adam and thanks for sharing your story.

There is a more in-depth discussion of LD, including doctors, treatments, experiences, on the LD blog by Gary here: http://ledderhose.blogspot.co.uk/.

I take slight issue with one thing you say about being diagnosed too late for RT. RT may be appropriate when the disease is going through an active proliferation cycle. Could be early or late. People have had RT for DD after NA or surgery to straighten a contracture, when the disease flared up again. The same principle no doubt apples to LD.

Finding a good knowledgeable doctor familiar with all the options that cause least damage and with least risks is the challenge.

Best wishes

SB

Hi Adam,

As you can see from the replies, this is a great place for support and help / info.

I wont lie i dont think myself i was in as bad a situation as you, but my Ledderhose hurt and i like you became very down. Telling people, although they were sympathetic, i think they just think its a lump! I did so much research and with the help of this site and Gary (from the blog) decided upon RT, travelling to Germany. Just 3 months after the first round i have managed to walk for well over 12hours. Yep it hurt but improved.

I remember reading in my research that people have had RT after having operations with success. I can only echo whats been said and i believe with RT if you catch it active, IE once they are growing for whatever reason (even from surgery) then it could work.

Theres a list of places for RT in all countries but you may need to travel.

Injections etc i cant offer much but they seem more promising now, and then there's orthotics as a temporary measure?

Hope this helps .

Hi Adam Where do you live in Australia.?

You poor sole. Ledderhose, Dupuytrens and Adelaide.