Movement disorders/cramping and muscle pain

    
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Posted by CCF MD mdf on September 16, 1998 at 23:16:59:

In Reply to: Re: Re: Re: Re: Movement disorders/cramping and muscle pain posted by JF on September 16, 1998 at 14:55:46:
  : For the first time in many years this answers give us hope there may be a solution to pursue(we have had many test - MRI's,EEG'sEMG's,muscle biopsy,all that produce abnormalities but nothing significant enough to be definative. We've been given differing opinions about the tremor in the legs and arms) Where and how do we find a doctor that specializes in dystonia? Mayo is almost impossable to get in. I would really be interested to know who and where the correct dx was made. Please provide any available info asap.PS The response is a little confusing when it mentions "none of our doctors were able diagnose it correctly" was that refering to ccf doctors?
  Penny, our daughter was diagnosed at the Cleveland Clinic after 14
  months of fooling around with a dozen specialists at our local Childrens'
  Hospital.  Childrens' diagnosed her with fibromyalgia, possible Reflex Sympathetic
  Dystrophy, and the ever-famous for teenage girls, "possible underlying
  psychological problem."
  The treatment we received by the neurologist and all the staff at CCF
  was commendable. We couldn't believe that after all that wasted time, our daughters's
  posturing lessened almost to normal after only 3 days on Sinemet.  It's
  worth a trial of this drug if a dystonia is suspected.  You can understand how
  unbelievable we thought it was that our "specialists' at Childrens' didn't try this.
  That's why it's important to find someone who is familiar with the
  symptoms of this disorder.  
  Contact www.dystonia-foundation.org/dmrf.html and they will send you a
  list of doctors in your area who are familiar with dystonia.  They
  don't guarantee these docs, but have a list of physicians recommended
  by dystonia patients.
  Good luck.
=
Depending on whether your problem is pediatric or adult, you would want a pediatric neurologist or a movement disorders specialist. We have both types of subspecialists at CCF, more than one of each.
From personal experience, I can tell you that dystonia is not always easily treatable, though sometimes people do quite nicely as the other person posting has pointed out. Dystonia is a symptom of more than one possible underlying disease process. For example, the type that is well treated with Sinemet is not the only kind. Of course, a movement disorders specialist will be the person who could identify dystonia as a phenomenon and then identify the particular dystonic syndrome and possibly the disease itself, and thus a treatment approach. I don't think we've yet established that it's dystonia, so it may not be appropriate to launch into a full discussion of that here.
You are welcome to call 800 223-2273 and ask for neurology appointments at 4-5559, tell them you want to see a movement disorders specialist for possible dystonia. Alternatively, follow the advice given regarding the list of movement disorders specialists closer to you (if applicable) - there are quite a few excellent ones out there, so a practical solution may work out well for you.
Good luck. CCF MD mdf.