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Less than 1 month both DD and LD starting - what is normal?
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03/26/2014 06:53
mukasama 
03/26/2014 06:53
mukasama 
Less than 1 month both DD and LD starting - what is normal?

I got my first Dupuytren's node on my Left hand 4 weeks ago, and now I have a second node on my palm, Ledderhose developing on both feet (arches and balls of feet), and I have similar pain and pulling in my right palm so I am pretty sure I will soon have nodes there as well. How usual or unusual is it to develop it so suddenly - within 4 weeks - on all four extremities?

I am a 52-year-old female, and I did have frozen shoulder 5 or so years back. At the same time that DD and LD showed up this month I've also developed ulnar nerve pain in both arms, with tingling and numbness in pinkies and odd aches and pains elsewhere. I'm a web developer so this has actually been a bigger problem than the DD so far.

I know there is no normal with this disease, but this seems to be happening so much faster than other experiences I've read or heard about. I'm a 52-year-old female, and I've always been really healthy, so this is a mental adjustment. Other than the Frozen Shoulder, I have none of the known risk factors - other than Northern European heritage.

My question is: What have others' experiences been with how DD or DD+LD first presented themselves and how fast it developed. Did it slow down after an initial burst?

I am planning to do Radiation Therapy as soon as I can to try to stop the progression. Has anyone had both hands and feet done at the same time? I am in Alaska, so looking at Scripps in La Jolla, CA, Dr. Chang in Palo Alto, but also Dr. DeLaney in Boston. I've also emailed and received replies from both Prof. S in Hamburg and Dr. H in Frankfurt. My insurance BCBS will cover it but my deductible and out of pocket are so high that it would the same cost or less in Germany.

That's it for now. I'm interested in hearing others' stories about their first weeks with either DD or LD.

03/26/2014 14:36
callie 
03/26/2014 14:36
callie 
Re: Less than 1 month both DD and LD starting - what is normal?

At age 55, my Dupuytren's and LD developed at the same time. Little finger (left hand) went from 0 to over 90 degrees in about 16 months. The Dupuytren's on the other hand went dormant for 13 years. The LD (on both feet) went dormant after about three years and is not any problem whatsoever now.

I had successful surgery on the little finger and irradiation on the right hand when it emerged from dormancy last year. I haven't decided whether, or not, the irradiation was successful. I think it might have slowed progression, but not sure. The irradiation was done in Portland, OR.

Edited 03/26/14 16:37

03/27/2014 03:34
switcombe 
03/27/2014 03:34
switcombe 
Re: Less than 1 month both DD and LD starting - what is normal?

I developed nodules in all four extremities within a few months when I was 58. That was two years ago. I traveled to Germany for treatment on my hands and they have been in remission since then. The nodules in my feet also went into remission, but without any treatment. So who knows if my hands might have done the same? However, I would still definitely recommend RT as the first choice of treatment.

03/27/2014 12:16
lori 
03/27/2014 12:16
lori 
Re: Less than 1 month both DD and LD starting - what is normal?

I don't have Ledderhose, but when I developed a nodule in my palm it progressed very rapidly. I had what appeared to be a callus for a few weeks, then a nodule and intense pain and within 2 months had a cord that stretched from the base of my middle finger to the bottom of my palm. I tried a cortisone shot to try and stop the progression at least long enough for me to research options and make a treatment decision. The shot helped for about 6 weeks but it was long enough to begin RT. I was concerned that at the pace mine was progressing I would have a cord that would begin contracting and then I would face RT and possibly NA. Thank goodness the RT stopped all progression.

Lori

03/27/2014 16:40
Gloria 
03/27/2014 16:40
Gloria 
Re: Less than 1 month both DD and LD starting - what is normal?

Mine started about a month ago also. Nodule in my right arch, followed within a couple of weeks by another a little closer to the ball of my foot and in the same spot on my left foot. No real problems at first, but now my feet will ache sometimes in the heel, sometimes in the ball of the foot. My toes go to sleep after standing/walking awhile. A couple of days ago my hands felt warm and tingly. Today my little fingers are tingly and my hands are cold. I'm 57, very active and healthy. I haven't found anyone in my family who had this. Some did have arthritis and I'm wondering if it could have been misdiagnosed.

The hyaluronidase injection from the Dr. in San Antonio looks promising. I hope Penny will post her progress. No idea what it costs. I haven't checked with my insurance co. I also have very high deductable.

Sounds like we're in similar situations.

Gloria

03/27/2014 17:02
mukasama 
03/27/2014 17:02
mukasama 
Re: Less than 1 month both DD and LD starting - what is normal?

Thank you everyone for your stories. I hope they will keep coming. Knowing how DD and LD first presented for people and how fast they progressed is truly helpful. It's also nice to know I'm not crazy but also not alone in thinking this is progressing very quickly.

Two questions for switcombe:

Quote:
I traveled to Germany for treatment on my hands and they have been in remission since then. The nodules in my feet also went into remission, but without any treatment.

Where did you go in Germany? Prof. S. in Hamburg or somewhere else? It sounds like he did both hands at the same time. Why did you decide not to do your feet? Was it too much to do at one time, or did he think they were not advanced enough to treat?

This sounds like a silly question, but how do you know it went into "remission"? People say the DD and LD can go dormant or into remission, but what does it look like or feel like that let's you know it is not active?

03/27/2014 17:05
Gloria 
03/27/2014 17:05
Gloria 
Re: Less than 1 month both DD and LD starting - what is normal?

I'll add one more question. When it goes into remission does it stop aching? tingling?

03/27/2014 19:48
lori 
03/27/2014 19:48
lori 
Re: Less than 1 month both DD and LD starting - what is normal?

Mine did. it was like having my old hand back. The only way I know I have DD is I can see the cord, and if I over use it it will ache for days. Also, if I bang or accidentally hit the cord I will get a blinding shot of pain.

Lori

03/30/2014 03:08
switcombe 
03/30/2014 03:08
switcombe 
Re: Less than 1 month both DD and LD starting - what is normal?

Yes, I saw Prof. S. in Germany. I didn't even realize that I had nodules in my feet until he pointed them out.

For me, remission means that my nodules and cords have not caused my fingers to contract and my hands are no longer painful, achy or itchy. However, I don't have the hand strength that I used to have.

03/30/2014 03:26
switcombe 
03/30/2014 03:26
switcombe 
Re: Less than 1 month both DD and LD starting - what is normal?

Mukasama, I noted on another thread that you are also dealing with tendinitis pain. I also have severe tendinitis issues in my forearms which began just before the Dupuytren's. In fact, it may have been what triggered it. The tendinitis problems were triggered by repetitive stress (piano playing). I take InflamaSYN and Traumeel ointment for the tendinitis. They help, but only temporarily.

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progressing   conservative   hyaluronidase   Ledderhose   tendinitis   starting   developed   treatment   52-year-old   Radiation   Germany   misdiagnosed   irradiation   Dupuytren   progression   accidentally   experiences   nodules   extremities   remission