Focal dystonia of the hand

[JP]

Anyone out there have focal dystonia of their hands or fingers?

[Jamie Brody]

I don't have it, but I do know a reporter who does.  She originally thought there was a problem with her steno machine because certain keys weren't working properly and she kept taking it in for repairs.  I don't remember exactly how she figured out it was her finger.  She has it on one of her pinkies.  I don't know if any other fingers are affected.  She was told there was a surgery that might help but she didn't want to risk it.  She had to stop reporting and she now teaches it.  

I'm not trying to scare you.  I don't know enough about the condition, but I would think that each individual is different.  Hang in there.  If you haven't already, try seeing another doctor about treatment or getting a second opinion.  You never know.   I wish you the best.

[Sandra Dillon]

Hi, I am from New York and I have experienced all of the above.  I go to acupuncture twice a year and it's gone; every twinge, all pain, gone.  I don't know if that helps, but...

 Also, I have arthritis in my left shoulder, that pain is gone too. 

[Linda Anderson]

Sandra,  Did you have focal dystonia?  What made you try acupuncture?  I do not experience pain, just the annoyance of dealing with it.

[D. Richard Lewis]

I have had focal dystonia since 1996....I got it from playing the flamenco guitar....I had to give up playing the flamenco guitar because my left ring finger would cramp up and curl inwards toward the palm....Over the years the condition has lessened in its cramping affect....I now play the piano with hardly any difficultly....I had taken up the piano when I was 20 years old.....I would advise anyone with focal hand dystonia to read the article by Jason W. Solomon: "What Every Guitarist Should Know: A Guide To The Prevention And Rehabilitation Of Focal Hand Dystonia."  He has a lot of useful information and exercises one can do to overcome this crippling hand disease.

[JP]

I will read this.  Thanks for the advice.

[Kerry F]

Try a "good" acupuncturist and "great" chiropractor.  Having the neck and upper back in good adjustment can really make a difference in the severity of this condition.  Also, acupuncture could help, as well as major dietary changes.

 

[Dorothy (Dee) Ayer]

I was diagnosed with Focal Dystonia today by my neurologist.  I thought I had writer's cramp for years, switching my pen between fingers.  Eventually I had to "monkey claw" whenever I held a pen to write.  Now, I cannot even monkey claw.  My hand completely drops.  It is my right hand.  I have been reporting for 20 years.  My right little finger, ring finger and middle finger curl constantly, even at rest.  I have a hard time picking up items and holding them.  I never had pain in my right hand other than the hand being tired and achy after a long day of writing.  The loss of motor skills was the indicator.  I went to three or four doctors, two of which are orthopedic hand specialists, with no diagnosis but "unusual presentation."  I am blessed I finally have a diagnosis.  I will always miss writing.  Still can't even imagine that I can no longer report....that is until I write on my machine and my brain freezes.  I wish....hope there is a cure.  For now, though, I am just focusing on becoming a lefty and trying to stay optimistic.  Life is strange, the changes it throws unexpectedly.  If I could give one word of advice to reporters, even though this is not a common disorder at all, be prepared with purchasing disability insurance, particularly if you're self-employed.