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12/16/2009 05:32
LindaJR 
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12/16/2009 05:32
LindaJR
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Re: newly diagnosed and need advice
I am also new to all of this. I have had Ledderhose's for about 1 year, (several nodules and some cording) in each foot. I also have quite a bit of inflammation. Steroid injections didn"t help much, not worth it. I always have some pain, and sometimes it is quite severe. About 2 months ago, I started to develop Dups in my right hand, (I'm left handed, fortunately), I already have multiple nodules, cords and mild contracture. Very cold sensitive, very painful at times. Also have pads on my knuckles which can be really tender. Now I've got a couple nodules in my left hand and just a little tightness, and a left shoulder that gets a little stiff and sore. So far, I have orthotics, expensive shoes, pain meds, and an appt with a hand surgeon next week. I know surgery on my feet is a bad idea, (I've actually had surgery years ago for plantar fasciitis, which is contributing to my problems). As is my limp, which is affecting my knees, hips and back. I will probably have NA or surgery on my hand, although, I am concerned that with such agressive disease, it will be back fairly soon. The real problem in all this is that I am a Critical Care nurse and work has become extremely difficult. I din't think I'm going to be able to do my job for much longer. I have often found info I needed on this forum. If anyone has any insight, I would be greatful.
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12/16/2009 06:42
newman 
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12/16/2009 06:42
newman
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Re: newly diagnosed and need advice
Hi Linda Australia Calling. Welcome to the forum. You dont not mention your age. Consider Low dose Radiotherapy. Do the reading- click on the left margin of the forum page. Radiotherpy for Morbus Dupuytren is recommended in the active stage before contraction. I have had Radiotherapy on both hands and feet and I am more than happy with the results. It is now two and a half years since I commenced treatment with no reoccurrence. Regards.
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12/16/2009 06:49
LindaJR
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12/16/2009 06:49
LindaJR
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Re: newly diagnosed and need advice
Thanks, I have been talking to my doctor about RT. We have to find someone close enough who doses it. By the way, I'm 53. Thanks for the response. I've already gotten so much from you folks. By the way, I didn't mean to sound whiny, but, it does get me down sometimes, it's really changing my life! How about some advice on ways to keep smiling when the going gets rough? Thans again.
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12/16/2009 14:36
flojo
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12/16/2009 14:36
flojo
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Re: newly diagnosed and need advice
I suppose you have looked in the left column under Radiation Therapy for clinics. Where do you live?
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12/16/2009 17:45
Murray
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12/16/2009 17:45
Murray
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Re: newly diagnosed and need advice
Well it didn't know what this was until a few hours ago. I have just returned from the Plastic Surgeon who has advised that I have Dupuytren at the base of my middle finger on my left hand. I had this bump about 9 months ago and know it is larger and tracing down about an inch toward my waist. I am 52 years old and love to play the guitar. I thought my guitar playing might be the cause, but now I am not sure. I can pass the flat hand test, so it is not restriction motion yet. I have been told to wait and see what develops - it might stablize at this stage. But if would seem that is still growing slowly. I wish there was something I could do. I guess, I wait, wonder and worry (and play the blues). Murray
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12/16/2009 19:06
lori
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12/16/2009 19:06
lori
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Re: newly diagnosed and need advice
Murray,
the hand surgeon suggested I wait also. He said it might not grow any more or it might. I took a picture of my hand from many angles and compared it on a weekly basis. From that I knew it was changing. I saw puckering, dimpling and a cord grow all within 6 months. If you are considering RT as a form of treatment, it should occur while it is gowing and before contracture takes place.
I did not wait because I felt like since I could see a cord, contracture was just around the corner.
Good luck!
Lori
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12/16/2009 19:33
Murray
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12/16/2009 19:33
Murray
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Re: newly diagnosed and need advice
Thanks for the advise on RT. I live in Toronto, so I should be able to get treatment around in the area. I'll look into that. Surgery does not look like an attractive option, to say the least. It sounds like RT is fairly successful at that early stages of DC. Is that the general opinion?
Murray
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12/16/2009 20:36
Murray
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12/16/2009 20:36
Murray
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Re: newly diagnosed and need advice
Lori, did you get RT for your DC? If so did work and how long ago. Do you think your DC was brought on by any specific activities? Sorry of all the questions.
All the best, Murray
Quote:
Murray,
the hand surgeon suggested I wait also. He said it might not grow any more or it might. I took a picture of my hand from many angles and compared it on a weekly basis. From that I knew it was changing. I saw puckering, dimpling and a cord grow all within 6 months. If you are considering RT as a form of treatment, it should occur while it is gowing and before contracture takes place.
I did not wait because I felt like since I could see a cord, contracture was just around the corner.
Good luck!
Lori
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12/17/2009 07:50
wach  Administrator
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12/17/2009 07:50
wach Administrator
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Re: newly diagnosed and need advice
Murray, you find some information on RT on this web site. Go to the menu on the left side, select "Radiation therapy" and something from the sub-menu which includes also literature on treatment of Dupuytren's disease with x-rays or electrons.
Wolfgang
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12/17/2009 12:59
lori
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12/17/2009 12:59
lori
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Re: newly diagnosed and need advice
Murray,
No problem about the questions. I can't say for sure if any activity brought it on. I used to play several musical instruments (bands in my 20's & 30's), I have and continue to work on houses and do a lot of physical labor. I play golf and tennis. I believe the combination has brought it on early. When I was diagnoised and did research into my family, I discovered my aunt and grandmother had it, but developed it into their late 70's early 80's (they believed it was arthritis). So who knows?
I finished my RT in August of this year. If you go and look under "pictures of my hand from MRI to now" you can see pictures of my hand from beginning to after radiation. My hand has improved since that last picture and if I were to take a picture now you would not see anything at all. It is amazing. The only side effect that I have is a little dry skin. I have regained most of my hand flexability back. I still have a hard time gripping something, unscrewing lids, grasping heavy objects that touch where the cord is, I will get a little twinge that reminds me all is not like it used to be. I am pleased with the progress my hand has made. It has improved much more than I expected. My only expectation was to stop the growth, but not only did it stop the growth but it dramatically improved my hand.
Lori
Edited 12/17/09 15:01
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