Hi all,
I was diagnosed in November 2008. I am a 55 year old female and have gotten so much useful information from this website. For the first few months I was in a complete panic and did not know what to do. I was considering every available option to keep my hand function. I had to slow myself down and start researching all options.

Two weeks ago I went back to the original hand surgeon who diagnosed me (I had visited a 2nd hand surgeon and a radiologist this past January) because I wanted to try to ascertain the rate of my progression since I had no basis for a comparison. I have no contracture (yet). I also was experiencing tremendous pain. He told me that in addition to the bilateral dups I also have arthritis and tendonitis in my right hand. He gave me a cortisone injection at the base of my thumb and next finger and it did help the pain. He told me to use epson salt warm hand soaks twice a day and also ice before bed. The warm water soaks are quite effective. When I returned to him last week and told him the the pain was decreasing but still there - he diagnosed my right hand with slight carpel tunnel and a pinched nerve. FIVE different things going on in one hand. It at least explained the severe pain I was going through (since most MD's say: Dups is not painful). Last week he started me on steroids: 4x a day for 10 days, reduced to 3, 2, and 1 over 13 days. My condition (the pain level) is 90% reduced.

I am still considering radiation therapy in the future but for now I'm trying to be a bit more moderate and to get through the summer months and see where this strange disease takes me.

Thank you everyone for your continued posts. I would be lost without the knowledge and information contained on this website.

Barbara (NY)

Judy,
I agree that this site is a Godsend. I too was in a tailspin - I had never heard of this disease so I was in a complete panic. I am calming down a bit now that I have a bit more information. I have it in both hands but my right hand is much more painful. The surgeon I saw at HSS was a Dr. Athanasian (sp?) and as I said - a wait and see man. I went back to my original hand surgeon from Beth Israel and I will continue to consult with him until I decide on my next approach. In the meantime - the soaks, cortisone and steroids are helping me. Please feel free to contact me any time about this - as I know the importance of sharing ideas and FEARS.

Good luck
Barbara

Lori,
I have been experiencing very much the same physical and mental symptoms as you have. Driving has caused me severe discomfort at times and I have even tried wearing open fingered gloves while driving. I continue to search for the answers on how to best handle this disease without letting it consume me. I have been constantly observing my hands (I have Dups in both) for any new cords, bumps, etc and I too am constantly fidgeting. Over the last couple of weeks since my cortisone injections and the current steroid treatment, I seem to have relaxed slightly. I think with knowledge, some of the fears are relieved. If you feel the need to discuss your situation you may exchange your personal email with me for continued support.

Hope this helps. There is comfort in sharing.
Regards,
Barbara

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Hi all!

I was recently (March 23) diagnosed with DC. I am attempting to figure out what to do for treatment, if any. This site is a blessing. The hand specialist I saw only discussed surgery as an option and that was only if I wanted it. His attitude was surgery is the only option and I am relieved to see that is not the case. I live in North Carolina, USA and am wondering if anyone has any feedback about radiation at the Virginia Commonwealth Univ. or the NA at Duke. I have a small lump on my right hand that is about 2 inches below my middle finger and am developing a cord from that lump to my wrist. This has developed for the last 6 months. I thought is was a callus until the cord developed. I do have pain in my shoulder and excessive use of the hand makes it ache. I am right handed and scared to death about what to do. I am 53 years old, female and very active. Reading the imput from others I am at a loss as to how to proceed or where to go. Should I wait and do nothing, or is there someone, anywhere or in any country, who is a specialist that I can see who can evaluate my symptoms and give some direction? Reading the journey of others reassures but scares me for my future. If I wait to see if it gets worse and do nothing will my options for other treatments go away so that surgery is the only option. I was so relieved to see a site that I could communicate with others about this condition, it calmed my fears down a little. The hand specialist was no help at all. I requested several times for a referral and/or other treatments and he was either unwilling or unable to do either.

By the way I was reading about others who have pain. I have an electric heated mattress pad that works wonders for that ache in my hand and shoulder. It goes away at night with all that warmth.

Thanks to all of you for your imput.

Lori

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if you are able to travel, i would go to paris and see dr. badois. half hour outside the city. he's a lovely man and probably one of the world experts. speaks perfect english. i had no contracture just lumps. i had been told by one doc to wait and see and come back when my fingers curled. instead, i decided to get a second opinion, though i was pretty sure it would be the same. you can imagine my surprise when dr. badois asked me if i wanted to treat this right there and then. i was overjoyed. that was oct and now its december. i'm always looking for changes, but things seem to be quiet. i am very cautious around my hand. charles eaton in florida has a great deal experience and was, i think the first american doc trained in this parisian method of NA. the NA procedure is really simple. no biggie. having had it done once, greatly greatly relieves me because i see its not invasive, it works, and its something that can be done many times in the process of this weird condition. any questions, happy to answer.
i am grateful to this site which led me to dr, badois.