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even our neurologist is confused...

A few months ago, my then 14 year old daughter began to develop tremors in her hands. They also became very sore, especially her wrists, and when this happens, they turn a purple color. The tremors also sometimes occur in her legs and feet.

She was refereed to a neurologist, who gave her a thorough exam, including MRI and blood work, and referred her to the pediatric rhumatoloy dept. to have them examine her as well to see if there was anything they could add.

A short time after that, she developed "fluttering" when her eyelids are lightly closed, and when she smiles, she gets tremors around her lips.

her neurologist felt that they were myoclonus and not so much tremors, and prescribed Kepra on a trial basis to see if it helped, and she saw the rhumatologist who told us she may have reynauls (sp.?) syndrome and they did a round of other testing that he haven't gotten the results of yet.

The Kepra hasn't helped much, and the neurologist is puzzled about what is causing all of this. She feels that the tremors and myoclonus are caused by the same region in her brain, and she has asked the hospitals other neurologist to see if he can add anything tot he discussion.

I'm wondering if anyone else out there may have experienced similar symptoms, and if so, what was the cause?
1 Responses
144586 tn?1284666164
Boy, that is very scarey.

Square one is to have her MRI read by another specialist. There are several ways to read an MRI, and for the most part doctors choose the easy way, which is less time consuming, but provides less information.

Secondly, you need another opinion, from a physician not connected to the ones you are seeing.

Get the excellent book by Dr. Jerome Groopman titled "A Second Opinion" and his other book titled "How Doctor's Think".

You are in my prayers.
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