Re: Movement disorders/cramping and muscle pain

Posted By Penny on September 16, 1998 at 10:44:03:

In Reply to: Movement disorders/cramping and muscle pain posted by CCF MD mdf on September 15, 1998 at 22:39:54:






: In a recent post someone responded her daughter had muscle cramps and pain which was eventually correctly diagnosed as a movement disorder. She didn't mention what the disorder was. I'm wondering what movement disorder might have these symptoms.What test could be done to identify them?
It was dystonia.  A trial of Sinemet (A medicine used to treat Parkinson's
Disease) ruled in Dopa-responsive dystonia.  
Some doctors have never seen a case of dystonia (apparently none of ours
did, since they couldn't diagnose her correctly), so if it's suspected I
would see a Movement Disorders Specialist or a Neurologist who is VERY
familiar with all forms of dystonia.
Hope this answered your questions.
=
For the first time in three years we have some hope this may be an avenue to pursue
The only comment I would add is that dystonia is not just a single movement disorder. In general, dystonia just refers to an abnormal pattern of muscle contraction which produces jerky movements or abnormal postures. The actual cause of the dystonia varies from person to person.
The type of dystonia mentioned above (Segawa syndrome, or dopa-responsive dystonia) is a small subset, though as it happens it is quite treatable and shouldn't be missed.
I agree with the advice given - see an experienced neurologist. Many doctors have read about dystonia and might have seen one or two cases, but there is no substitute for having seen lots of it. Once you've seen it, you can diagnose it. Many movement disorders are rather obscure to doctors who don't encounter them on a regular basis. It's not just a matter of getting lab tests or an MRI or something like that.
I hope this helps. CCF MD mdf.
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?