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I think I have early-stage Dupuytren's
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09/08/2013 03:19
Clm 
09/08/2013 03:19
Clm 
I think I have early-stage Dupuytren's

About 6 years ago, I was getting a pedicure, and the woman massaging my feet pointed to a hard lump, which a podiatrist diagnosed as a fibroma. It grew a bit over time, and I developed a couple more. I am a medical writer and came to realize I probably had Lederhose disease. I never saw a need to seek a diagnosis because it did not interfere with walking or cause extreme pain (just tenderness) and I had already been told a fibroma would likely return if I had it removed. One nodule disappeared on its own and another shrank after I started wearing orthotics, although the area gets tender with long walks, and I get severe leg cramps after wearing heels.

A few years ago, a few knuckles became swollen and extremely tender; I was convinced I had arthritis because a great-grandmother developed severe arthritis around the same age (late 30s) and was said to have had gnarled, claw-like hands (Dupuytren's?). My father also said he was getting arthritis when he was in his early 50s, but passed away before I saw his hands or he had much progression. The two rheumatologists I consulted about my knuckles said I did not have arthritis, but neither offered a diagnosis.

I was then diagnosed with diabetes (apparently common with Dupuytren's); shortly after, the pain/redness in my knuckles lessened, so I assumed it had been diabetes-related inflammation. My knuckles still had bony lumps on them. Other knuckles subsequently became affected, and now all my fingers are somewhat stiff. The newer pads hurt when I bend or bump my fingers. I tend to have trouble gripping things and find is painful to stir a pot or grate cheese.

A few months ago, I noticed a tender pea-sized lump on the palm side of my right middle finger; my doctor assured me it was not a ganglion cyst and said to ignore it unless it grew or the pain worsened. The pain disappeared as the lump hardened, so I stopped worrying about it.

I found my way here after results of a 23andMe genetic test indicated I had a greatly increased risk of Dupuytren's, which I knew was associated with Lederhose. I never considered I might have Dupuytren's because I had no palm lumps or contractures. After reading more, I now realize I likely have Garrod's nodes, a nodule on the palm side of my middle finger, and thickening cords. I can slightly see and feel cords in both hands, although more so in the left hand, which has also been feeling very achy lately. I can also feel lumps beneath the skin, but they are not visible.

My boyfriend and my kids think I am odd because I keep asking to feel their hands to see if the lumps I feel in mine are normal. (I don't feel them in theirs.)

After reading more about the disease and its treatments on the forum, I made an appointment at a hand clinic for Thursday and contacted a radiologist who treats early-stage Dupuytren's. He said he might be willing to treat me once I have a diagnosis and he evaluates my hands.

I took several pictures of my lumpy appendages and wondered if there is a place where people share their images; I have had trouble finding good pictures of Garrod's pads and would be interested in seeing some for comparison in case mine are just diabetes-related gout or something. I also wondered whether anyone has ever had trouble getting their Dupuytren's diagnosed prior to having contractures.

Thanks, and I apologize for the long first post!

09/08/2013 12:29
wach 

Administrator

09/08/2013 12:29
wach 

Administrator

Re: I think I have early-stage Dupuytren's

Welcome to our forum! We don't mind long posts, we love them!

You can find a pic on knuckle pads on http://www.dupuytren-online.info/knuckle_pads.html. Pictures illustrating the various stages are on http://www.dupuytren-online.info/dupuytr..._therapies.html. And. of course, there is much more Information on this website, additional to the forum itself. More detailed personal stories are on http://www.dupuytren-online.info/dupuytr...xperiences.html.

You can upload pictures as attachment and can include them in your post.

Wolfgang
PS: it's the first time that I heard of gene testing as means of detecting Dupuytren's. Cool!

Edited 09/08/13 15:32

09/08/2013 13:13
Jolene 
09/08/2013 13:13
Jolene 
Re: I think I have early-stage Dupuytren's

Hello
I am so sorry you are now apart of the Dup family. For me it has become an emotional roller coaster.

09/09/2013 15:55
JeffM 
09/09/2013 15:55
JeffM 
Re: I think I have early-stage Dupuytren's

I have just recently been diagnosed, but have had a very similar experience to yours. I have had enlarged knuckles since I was in my late 20's, starting with a single finger and moving to all of them eventually. I have been told they are arthritis by one doctor and calcium deposits by another, but with no course of treatment. I am now 46 and in the last year noticed lumps in the palm of my hand. The doctor originally told me it was likely a cyst and not to worry about it. I have since developed lumps in my other hand and cords have started to form. I have found out that my Grandfather had surgery to correct his hands. Based on this information and the progression of my hands, the doctor agrees that I have Dupuytren's. Unfortunately she has also told me that the only course of action is to wait for the progression of the contracture and have injections or surgery. After finding this site, I have started to think of alternative treatments. I am starting with my Naturopath and Acupuncture to try to slow this down, but am seriously looking at radiation therapy as well.

I really have noticed the decrease in strength in my hands and they get quite achy at times. They do cramp up easily when I use them too much. I play guitar and notice that I don't have the ability to play very long without cramping.

My next move is to get into a hand specialist and look into radiation treatments. Based on the information on this forum, I am seriously looking at going to Germany for the treatments.

Best of luck with your course of action. Keep us updated on your progress.

Jeff

09/10/2013 03:58
Clm 
09/10/2013 03:58
Clm 
Re: I think I have early-stage Dupuytren's

Thanks everyone, for your responses. I wanted to clarify that the 23andMe test did not identify me as having Dupuytren's. It just said that I had a couple of mutations that have been associated with a greatly increased risk of Dupuytren's, which made me take a closer look at Dupuytren's

It sounds like many people here have gone through a lot, and I am worried about what the future holds. I depend on my hands to work, and I do not know what would happen if I were unable to type. I have already had to limit some of the activities I used to enjoy doing, like crocheting and cooking, because it makes my hands hurt. If one has surgery to correct a contracture, does that relieve the achiness people have in their hands? I am also worried it might affect driving. Jeff, I would really look into radiotherapy. I read some of the published literature, and it seems like it has a pretty good risk/reward profile if you have early stage disease. I put the photos of my hands and feet on Flickr because I can't figure out yet how to put them in the post. (Probably easier for people to see, too.)

http://www.flickr.com/photos/101552940@N03/

Sorry the quality is not as good as I would like. It's hard to photograph your own feet/hands! I'd be very interested in knowing whether my bumps/lumps look consistent with Dupuytren's in other peoples' experience.

Clm

09/10/2013 14:57
JeffM 
09/10/2013 14:57
JeffM 
Re: I think I have early-stage Dupuytren's

Thanks for the pictures. Your knuckle pads look almost identical to mine. The nodules and cords in your palms also appear to be very similar. I am also very worried about losing the full use of my hands, as I play guitar and it would be a great loss to me to lose that ability. It also seems from my research that this could progress very slowly or not at all. I am making sure to keep a close watch on the progress of the condition and will pursue radiation therapy if it progresses any further. I am not comfortable waiting until the contracture starts.

Jeff

09/11/2013 11:43
Clm 
09/11/2013 11:43
Clm 
Re: I think I have early-stage Dupuytren's

JeffM:
Thanks for the pictures. Your knuckle pads look almost identical to mine. The nodules and cords in your palms also appear to be very similar. I am also very worried about losing the full use of my hands, as I play guitar and it would be a great loss to me to lose that ability. It also seems from my research that this could progress very slowly or not at all. I am making sure to keep a close watch on the progress of the condition and will pursue radiation therapy if it progresses any further. I am not comfortable waiting until the contracture starts.

Jeff

Thanks Jeff. The more I look around here, the more confident I am that I likely have Dupuytren's. I do not play music, but I can imagine losing the ability to play as you did would be a very personal loss. I have struggled with the question of whether to pursue radiotherapy or wait. I have decided to seek radiotherapy if I get a positive diagnosis because I have read it is most effective when the disease is in an early active stage. Also, I cannot really deny anymore that whatever is wrong with my hands shows ongoing progression. (First one knuckle, then a few, then several, followed by a nodule, and now thickening.)

I also came across a Website by someone who I believe posts here that mentioned a ruler test. You put each finger up against a ruler to see whether the finger lies flat without forcing it. If light is visible between your finger and the ruler, you have some degree of contracture. I assumed everyone's fingers would show gaps when laid against a ruler, but my son's fingers and my boyfriend's fingers did not, whereas 3 or 4 of my fingers had pronounced gaps. That was enough to convince me I could not just dismiss all these occurrences as a series of different afflictions that coincidentally resemble the symptoms of Dupuytren's.

The only things that cause me to question a diagnosis of Dupuytren's are that the pain and swelling in my knuckles varies (although the lumps do not) and the stiffness gets worse when my blood sugar is out of control. I have also been wondering if I have some weird fibrocystic thing going on; several months ago, my boyfriend was touching my arm and commented that my muscles felt weird and "lumpy." Sure enough, I can feel all these lumps under my skin, particularly in my arms and legs that I do not feel on other people. I also have been told I have fibrocystic breasts and uterine fibroids. It just seems like a lot of fibrous things going on besides my hands and feet.

09/11/2013 16:27
JohnG 
09/11/2013 16:27
JohnG 
Re: I think I have early-stage Dupuytren's

The photos look like my dupytren's nodules, ledderhose nodule, and knuckle pads, but more severe than mine.

You mentioned a need to get a diagnosis. For the hands, you can get the diagnosis by visiting a hand surgeon, which should be very easy to find. The hand surgeon will need only a minute to palpate your hand and find the nodules and cords, and to identify the knuckle pads.

If you're thinking of getting radiation treatment, you could ask the hand surgeon to mark outlines of the nodules and cords on your hand with a ball-point pen, and then take a photo yourself, right away, before it washes off. See the example in slide 2 of this presentation:
http://www.dupuytren-online.info/ASSH_20...files/frame.htm

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