My daughter, who is a teenager, developed essential tremor about a year ago. At the same time, she started showing symptoms of reynauld's syndrome, as well as pain in her hands and sometime feet that feel like "broken glass poking into her" .
A few months after that, she developed myoclnus around her mouth and eyes, and she hold her wrists turned out to the side when they are at rest or she is writing.
She also has a lot of pain, sometimes in he neck now too, and every so often she slurs her speech.
she is being followed by a pediatric rhumatologist,a neurologist and an occupational therapist, and has had an eeg, a CT scann, an MRI, x-rays, a huge amount of blood work, a lumbar puncture, and more. They only odd results was elevated levels of a marker for inflammation. They have eve done genetic testing to rule out some rare conditions. and they have ruled out epilepsy, a brain tumor, lupus, rheumatoid arthritis, parkinsons, lyme's disease, persistent strep, cervical dystonia, and some rare diseases.
she's been prescribed leitracem ( keppra) and clonazepam.and wears wrist braces to help keep her wrists comfortable if they are hurting, and her doctors are considering offering imunoglobulin treatment
Her doctors are really awesome, and have gone above and beyond in trying to find out what's going on, but they are are stumped. They have even gone as far as to discuss her case with colleagues at a conference.
I'm wondering if anyone might have any ideas of what this could be?
