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Photo and question
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pia2some 

pia2some 
Photo and question

I'm 49 years old and have had DC for about 8 years. Everyone in my mom's family has it pretty severely. Lucky me got the gene, too! Last spring I had one round of Xiaflex and I'm not sure I'll do it again, but that's another story.

On my right hand I have a very pronounced cord that runs from my palm up to the middle joint on my pinky. That's the PIP correct? That's been there for a good while and it's large but it doesn't bother much. Most of the contractures in my right hand are in joint at the base of the finger - MP?

Anyway, in the past month every one of my fingers on my right hand has developed a bump on the middle joint. It's on the underside of my hand and not on the knuckle side. What is this? There are no cords or nodules below all of those fingers so I wasn't sure what was happening.

Look at the photo and see if you are able to discern the bulge of a lump forming on those middle joints. You can see the one on the pinky clearly. But it's attached to a cord. I don't know what the other fingers are doing. Ideas?

~ dawn



callie 

callie 
Re: Photo and question

My first thought is that those are active Dupuytren's serving the same function as nodules. Active cells that are getting ready to produce cords. RT would be my suggestion. Having said that, my opinion is just one person's opinion that could be incorrect. Hard to tell over the internet.

pia2some 

pia2some 
Re: Photo and question

callie:
My first thought is that those are active Dupuytren's serving the same function as nodules. Active cells that are getting ready to produce cords. RT would be my suggestion. Having said that, my opinion is just one person's opinion that could be incorrect. Hard to tell over the internet.

That is what I was thinking. My pinky did the opposite, though. I had a couple of nodules in my palm and then the cord started and then the lump on my pinky joint showed up to make one big long connection of tissue. Maybe my fingers are developing a type of nodule in on those middle joints and then will work down into my palm. The ring finger is the one that was treated with Xiaflex. The cord that was beneath it in my palm is gone. The doctor wanted to treat the pinky and cord but I've declined for now. There are still nodules below the ring finger but no cord.

Of course, my left hand is progressing very fast now. As of last January it had no sign of nodules or cords and anything. Now it looks worse than my right hand. I can't find anyone around here who does RT or has even heard of it. And my husband is currently unemployed so there is no way I can afford to pay for anything not covered by insurance. Sigh.

~ dawn

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: Photo and question

How odd, what does it feel like. A nodule that tries to move with the skin layers or something attached to the joint capsules? Only on that hand? Lumps and bumps can arise because of other things as well as DD, so ....

I would ask a hand specialist for a diagnosis.

pia2some 

pia2some 
Re: Photo and question

spanishbuddha:
How odd, what does it feel like. A nodule that tries to move with the skin layers or something attached to the joint capsules? Only on that hand? Lumps and bumps can arise because of other things as well as DD, so ....

I would ask a hand specialist for a diagnosis.

They all feel exactly like the lump on my pinky joint. My hand surgeon said the pinky joint lump is definitely part of the cord. I'm just going to assume that the other joints are developing the same thing. It's just not following the same course that the pinky did. But then, that's the nature of DC. They are only on the right hand. My left hand has just recently started getting bad.

I was just wondering if anyone else had similar lumps on their fingers like I do.

~ dawn

Seph 

Seph 

Re: Photo and question

pia2some; Your hands look very familiar to me. My left hand has no lump or cord from the palm but my thumb and first two fingers have lumps very similar to what your hands are showing. I have a large lump just below the joint of the thumb that looks like the one on your little finger. This repeats where my thumb meets my hand, in the side of the hand between thumb and first finger and again at the first joint of each of the next two fingers.

The lumps are not painful in themselves but they suffer a lot of wear and tear as they affect everything that I grip with that hand. When using a cross trainer in the gym, which I do 3-4 times a week, I am being forced to twist my hand to ease the wear and tear on the DD lumps.

These lumps on my left hand all appeared over the past 6 months or so.

I am having NA done to straighten two fingers on my right hand in two weeks and I will consult with the doctor about the issues on my left hand at the same time. I am seeing Dr Marie-Pascale MANET (recommended by Dr Lermusiaux who is now retired) in Paris where they have a lot of experience with NA. I will let you know what I find out.

Larry 

Larry 
Re: Photo and question

Looks like very active Dupuytren's Disease - even with swelling of the joints ... ?!
Try to get somathing against the proliferation of cells ... That's radiation therapy !
Dr. Weiss in Richmond Virginia may be of help . All the best, Larry

flojo 

flojo 
Re: Photo and question

Looks like active Dupuytren's to me, too. What other symptoms do you have - achiness, tightness/pulling across the palm and fingers, crawly/tingly feelings in the affected area, ___?

I would be seriously looking at radiation therapy.

pia2some 

pia2some 
Re: Photo and question

flojo:
Looks like active Dupuytren's to me, too. What other symptoms do you have - achiness, tightness/pulling across the palm and fingers, crawly/tingly feelings in the affected area, ___?

I would be seriously looking at radiation therapy.

Oh, it's active. It's been active in both hands for almost two years now. Both hands are incredibly tight. None of my fingers will straighten out on either hand. Both palms are full of cords and nodules. Like I said I had one round of Xiaflex last spring. I see Dr. Costas at The Hand & Upper Extremity Center of Georgia. He's been a part of the trials of Xiaflex from the start. Anyway, I'm not sold on Xiaflex and since both hands are so involved now it would take a lot of injections and a lot of money.

I have a lot of pain in my hands. I know that is unusual but I do. I'm also diabetic and doctors have said that makes my hands and feet more sensitive to pain. Neither hand lays flat on a table. The degrees of contracture on my right hand are anywhere from 30-50. The last time Dr. Costas measured was in June and I am sure they are worse now. The other thing is that my middle finger is being pulled sideways toward the ring finger. I've not seen that in any of my family members who have DC. Dr. Costas said my disease was advanced considering my age and would probably get more severe. At this point I'm thinking maybe I'll just wait and have surgery to correct it. Sigh


~ dawn

pia2some 

pia2some 
Re: Photo and question

Larry:
Looks like very active Dupuytren's Disease - even with swelling of the joints ... ?!
Try to get somathing against the proliferation of cells ... That's radiation therapy !
Dr. Weiss in Richmond Virginia may be of help . All the best, Larry

My joints aren't swollen, though. The bumps in the picture are nodule - I believe. They've just shown up over the last two months. They are hard and feel just like my pinky which Dr. Costas said was definitely the end of a cord. I do think that each finger has developed a nodule and will eventually have a cord from that middle joint down into my palm. The bumps on the knuckles prevent me from making a fist because they are large enough to prevent my fingers from closing all the way in. It's like my joints are swollen but it's just the nodule on each finger joint.

Seph, I wish you well with your procedure. I hope it is successful!

~ dawn

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