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New To All Of This......Help
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07/09/08 22:23
TWoods 
07/09/08 22:23
TWoods 
New To All Of This......Help

Hi Everyone,

I'm thrilled to have found this site becase about now I'm sooooo confused and downright scared as to what my future holds for me ! I have just been diagnosed with a disease I can't even prounce I have been reading evrything I can find about this unusual disease. The reality is the more I read the less I know YIKES. The one fact that has hit me the hardest is that Duputure Contraction is a progressive disease that is debilitating and that even with treatment unfortunatly will probably return Apparantly for years the most common treatment has been surgrey (boy do the pictures of it look gross). Although the surgery looks gross I'm sure it is just shy of a mricle for those disabled and suffring in stage 4. I myself am in stage 1 and all of this infrmation gives me so much to look forwrd to LOL, I say that tounge and cheek. Better for me to see the humor in things, it keeps me from crying.

So in a nutshell this is what brought me to ths site and why I so need to tap into all of your combined knowledge experiance and advice. A nodual apprared on my hand out of the blue one morning. It was a large nodual,over the next few days 4 more appeared on the same hand. The next couple of weeks they grew and grew and hurt like hell. Whoever wrote that the noduals are not painful doesn't know what there talking about. The fallowing week the same sequece of events accured but now it was my other hand. So within one month both of my hands had developed nice size noduals and they are continuing to grow and cause me dscomfort. I love using my computer and my hands hurt after typing for 5 min. even pushng the little buttons on my cell phone is a challange. Openeing jars, forget it and sometime I can't even open a soda. Yestrday I couldn't even turn my doorknob to get out of the house. OMG , It frightens me thinking of what other diabilities are to come for me? Have any of you experiance any of these or other challanges? I would be gratefull to know how you deal with them. Have you heard of any voice activated computer programs or cell phones that don't cost a arm and a leg? It sure would be great if companys provided discounts for disabled people.

From what I understand any of these alternative tratments are best done in stage 1 or 2, is this true? If it is,I feel a degree of pressure bcause I would say my disease is moving along (agrssive). Here is the bigest problem I have, I can't find one doctor in Las Vegas that will do any treatment other than surery.Anyone know of a doctor in Vegas?????????I can travel to L.A. if need be, I guess Mayo Clinic in AZ. is also a option. I need to see a doctor and fast. Please tell me where to go, and who to see to get the best treatment possable. I thank you in advance for your kindness in answering my pleas for help. Words are not enough in expressing my grattatude for your advice.

Terry

07/10/08 02:57
carol 
07/10/08 02:57
carol 
Re: New To All Of This......Help

hi Terry Sorry to hear about the rapid progression of your nodules. I have nodules on both my feet and hands and it has been my experience that they grow in spurts for no reason I can figure out and then are stable for a while. Sorry I don't have any treatment wisdom for you. So far I havn't been able to find anyone in my HMO willing to do radiation. On another note check your cell phone for Driving Mode. On my cell phone (which is older and cheep) this is a voice activated dialing system. There are also door knob adapters that you might try. They were created for people with arthritis and pad and enlarge the knob. Hope you find a great doc. carol

08/20/08 08:01
smithster 
08/20/08 08:01
smithster 
Re: New To All Of This......Help

hi, your not alone. i have what sounds to be a very similar type of aggressive DC, grows in spurts, on-off(lately mostly on). i had traditional hand surgery 10 years ago, 1 little finger, had NA procedure last year, both palms,5 fingers, both thumbs, each procedure was a failure with DC returning as i was healing-both times. now i just became aware of small nodules in feet. if my feet progress anything like my hands, i will be a cripple within a few years. im 48 y.o. male, single dad of 2 wonderful kids, ages 10/12. i dont really have time for this stupid disease, but...its late and need to go, but your post touched me. i have the same thoughts/fears/anxiety. i will post back when i have some time and relay some of my experiences. im interested in your progress/outcome and anyone else that has rapidly growing, aggressive DC/LH, please post.

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