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05/09/2005 23:42
Randy H. not registered
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05/09/2005 23:42
Randy H. not registered
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Kirsten,
This disease can certainly be tougher on some than on others. I am saddened to hear you story.
My left it fairly shot from a bad reaction to OS, and like you, I'm going to be using NA to keep my right hand going. You have been through the War more than most posters here, so your opinion and experience carries a lot of weight. Personally I chose a PIP contraction of 30 degrees as the trigger point to have a first NA. I suspect I will repeat this, though not as regularly as you have reported. How far do you let a contraction go before a repeat NA? What is your experience and professional advice tell you? What is you game plan?
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05/10/2005 23:09
Stevenot registered
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05/10/2005 23:09
Stevenot registered
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Wow, I am also sorry to hear how agressive the disease has been with you. I too was on a similar path...having a 45 degree contracture develop within a month from just a lump before that...NA and then a month later 45 degrees again. After my second NA Eaton suggested Colchicine and I also took Acetyl L Carnitine and knock on wood I have not had any more progression...did he ever suggest you try anything?
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05/11/2005 23:25
Kristen 
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05/11/2005 23:25
Kristen
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Colchicine
Steve - Thanks for the suggestion. Courtesy of Drs. Lermusiaux and Eaton, I have done stints on both colchicine and allopurinol - no positive results for my hands - just an uncharacteristically heavy coating of plaque on my teeth, according to my dentist. I'm wide open to trying just about anything that might slow it down, but no luck so far - on to hypnosis, faith healers, voodoo, chopping off the heads of chickens, whatever!!
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05/11/2005 23:17
SusieQ
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05/11/2005 23:17
SusieQ
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acetyl-l-carnitine
Kristen
You mentioned some stuff (in response to Steve's post) that you had previously tried.
He had also mentioned acetyl-l-carnitine in a previous post.
I am new to all this. Around the beginning of the year a lump appeared in my palm, and quickly two more appeared. (I'm 61.)
Just because it sounded safe, possibly beneficial to health, and easy to find, I started taking a small dose of a-l-c (500 units) almost daily perhaps eight weeks ago.
Since then there's been no progression I can detect. I have a slight, almost imperceptible forward leaning of my right ring finger. Its still as subtle as it was when I started taking a-c-l.
I HAVE NO IDEA WHETHER THERE IS ANY CAUSE/EFFECT since dc manifests and progresses so individually.
However, if you'd like to be the second person in my little "study" of the effects of just a-c-l, please join me and let me know what happens. Since your situation is severe and mine is not, you might want to up the dose significantly--apparently safe at larger doses--do a bit of research if you like the idea, and see if you're interested!
Best of luck to you in dealing with this, in any case!
Susan
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05/12/2005 23:33
Kristen
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05/12/2005 23:33
Kristen
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Acetyl L Carnitine
Susan - I ordered some yesterday and intend to give it a try. My case will really put it to the test. Kristen
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