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06/11/2011 20:35
annmaiden 
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06/11/2011 20:35
annmaiden
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Newly diagnosed
Hi, my name is Ann and was just diagnosed with this debilitating disease. Never hearing of this disease, was sent to an orthopedic hand surgeon (who made this out to be no big deal) said we would just watch the two nodules in my left hand, one in right hand and one in left foot. However after searching out information on the internet and this site have come to realize just how devastating this disease is.
I am on SSD medicare and have also noticed the problems with medicare paying for treatments for DD. I live in TN and can not seem to find anyone doing RT and would like some feedback or suggestions as to what can or should be done next. This really scares me as I am also raising my 11 year old grandaughter. Thanks for your help as it is much appreciated.
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06/12/2011 07:47
wach  Administrator
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06/12/2011 07:47
wach Administrator
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Re: Newly diagnosed
Hi Ann,
just a comment from someone who has been suffering from this disease for the last 30 years: it's not as devastating as it may look at first sight. Sure, Dupuytren's is a chronic disease and there is no cure for it. But disease progression is very slow and for many it never becomes an issue at all. Some people develop nodules and it typically it takes many years before a finger contracts (everyone is different and for some it may progress faster but that's an exception).
With a contracted finger you have options like NA, collagenase or surgery to get that finger functional again. Therefore not every nodule needs to be irradiated. Having said this, radiotherapy is a good means to stop aggressive, quickly growing nodules and to treat big nodules e.g. on the feet.
The Internet, including our site, is showing drastic pictures. It wouldn't make much sense to show the not developed stage, would it? So don't be frightened by what you see on our web site.
Wolfgang
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06/12/2011 14:39
LubaM. 
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06/12/2011 14:39
LubaM.
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Re: Newly diagnosed
Hi Ann,
Welcome to the Forum. This is a weird disease in that it is so different from person to person. If you are on Medicare and were just diagnosed, there is a good chance that you will face slower progression than those who were diagnosed young. On this Forum you will find a wealth of information on all stages of the disease and possible treatments. Read all you can here and come back with more questions, many will answer and give advice so that you can make your own decisions about treatment.
I've had a very successful Radiation treatment (RT) in November 2009, for nodules on my left hand and left foot that stopped the progression of the disease. In Nov. 2009 Medicare paid for my RT treatment. Others on this Forum have a problem with them covering the RT payment now. You can find all the related information on this Forum by using the Search option...
Best of luck to you...
Edited 06/12/11 17:40
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06/12/2011 19:00
spanishbuddha Administrator
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06/12/2011 19:00
spanishbuddha Administrator
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Re: Newly diagnosed
Hello Ann. Welcome. I just wonder what prompted the diagnosis? Many people don't realise they have it even though they are aware the have some hard skin or small lumps in the hands or feet. Usually though if the disease is active there may be some soreness, aching, tingling and so on, or other physical changes. In the absence of these then perhaps you can just 'watch and wait' otherwise do more research on this site, including your health providers and insurance.
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06/13/2011 01:57
annmaiden
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06/13/2011 01:57
annmaiden
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Re: Newly diagnosed
AnntyThank you for the information. What prompted the diagnosis is the fact that in December 2010, I found one small dot of a hard nodule that I thought nothing of as I thought it would go away. This was on my left hand and it continued to grow. Then I found one on my right hand near my thumb about a week later, the left foot two weeks after that. I went to my Dr. because I have had cancer twice and was concerned that it could be cancer. My Dr. sent me to a orthopedic hand specialist who examined and then took x-rays. He confirmed the diagnosis at that time.
Before they appeared, my palms would itch and tingle but already have thicking of the cords and one of the nodules on my right hand is rather large and painfull.
I have no idea how rapidly they grow but mine have grown rather quickly. The only association to any symptoms are frozen shoulder and Irish decent. I also was involved in an auto accident a year ago.
This site is helpful but I agree with one of your members that not enough collective data or research has been for this disease and a celebrity out there just might help.
Now that I have this I will do all I can to help.
Again thank you all whom have responded.
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06/27/2011 19:54
Jennie 
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06/27/2011 19:54
Jennie
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Re: Newly diagnosed
Dear AnnMAiden
I was also just diagnosed though at present it is just in my right hand and there is no history of Dupuytren's in my family either.
You mentioned you were in a car accident a year ago - I was in one 5 years ago and have used crutches or a cane ever since. The hand that is affected is the one I use a cane with. I was wondering if you used crutches for a long period.
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06/28/2011 02:24
annmaiden
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06/28/2011 02:24
annmaiden
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Re: Newly diagnosed
Hi,
No I did not. But I will say mine is progressing real fast. I have found that they do do the RT in Birmingham, Al. and NP in Memphis which is close to me (or within a couple of hours). It also has on this site where and which Dr.s do what. I will be looking towards Nashville as my daughter lives there and hope I can see a Dr. in Nashville.
The Dr. (hand surg.) said not to worry about it and we would just watch it. Easy for him to say. My right hand stayes puffy and my right thumb has limited motion with cords that I can feel. As you just learning all I can and at least on this forum you receive a lot of input and a lot of support.
Please keep in touch as I also and looking to have something done with out going through surgery.
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06/28/2011 13:48
Jennie
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06/28/2011 13:48
Jennie
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Re: Newly diagnosed
Hi Ann,
Again - like you - I'm just finding out about this disease - and like you I have found a wealth of information and support on this site. A friend of mine who is into Yoga talked me into doing the MELT program which is a routine using small excercise balls to manipulate and 'hydrate the facsia' in the hands and feet. Since I believe Dupuytren's affects the fascia I figured it was worth a try. I've been using the program for a few weeks and my grip has strengthened and the chord in my right palm appears not so pronounced. I will go back to the orthopedist that diagnosed me in a month or two so he can objectively tell if there is any significant change. One thing it does for me is give me something to do - I have to do something positive to deal with things or I go nuts. I figure that it shouldn't hurt and it might help - It will also tell me if and when I start to lose any strength or flexibility in my hands so I can relate that to the doctor.
I have read how debilitating this disease can be as well as how other people cope and view its estrictions as a challenge to be overcome.
I've been an educator for close to 30 years and I have learned that children love to help. I do know that raising children takes alot of strength, humor and time as well as love. I do wish you the best.
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06/29/2011 19:14
lori
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06/29/2011 19:14
lori
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Re: Newly diagnosed
Jennie,
Take pictures of your hand, that way you can see if your hand changes. As time goes on, your mind forgets when a nodule starts, or when did that cord start to show, or when did I start to feel that your hand was weakening. If you keep a log and pictures you can track the progression or changes to see if it is starting to stabliize or if the changes are occuring more rapidly. I found it extremely helpful. It is also great to be able to look back 2 years ago and see what a difference RT had on my hand. I just keep the pictures on the computer and it is easy.
Lori
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07/01/2011 17:19
Jennie
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07/01/2011 17:19
Jennie
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Re: Newly diagnosed
Lori,
I will do that - my digital camera has been collecting dust this year. Thanks for the suggestion.
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