I have spinal myoclonus. I underwent several tests at Mayo clinic
to find out what's causing this. EVERYTHING came back normal.
The tests I've had are: MRI brain, MRI Thoracic Spinal Cord, MRI pelvis,
Cat Scan of body, EEG, EMG, ECG, Echocardiogram (I have a heart murmur),
thorough blood tests, x-ray of chest, ultrasound of pelvis, endoscopy,
24 hour unrinalysis, and a spinal tap. I'm relieved this isn't being
caused by a tumor or disease, but I'm frustrated not having an answer.
The neurologist said I'm healthy, which is great, but I don't feel healthy.
He mentioned if this was an auto immune system problem, there is a
cortisone treatment I could try. But he said that was just a guess at
what's causing this. My symptomes are myoclonus, hand twitch, tingling
arms and legs, headache, concentration problems, fatigue, hesitancy
urinating, leg gives out on me when I'm stressed or tired, recurring sore
on my tongue. The myoclonus gets worse when I'm stressed or tired. Could
this be a psychiatric problem? Could it be MS? (I was told that was a
possibility in the beginning. I really need help, this is driving me
Spinal myoclonus, as you likely know, has a diverse list of causes. Included are compressive myelopathy from tumor, traumatic myelopathy, MS, post-viral myelitis, viral infection such as zoster, HIV or HTLV1, intrathecal drugs, spinal angiomas, vascular disease, and various others. In fact, a large proportion of reported cases do not have an identified cause, and some do not even have any abnormality on imaging (MRI), or in CSF. Spinal myoclonus can be the short- or long-term residue of a spinal process that has come and gone. Hence it should come as no surprise that a center as proficient and thorough as the Mayo Clinic could not figure out the cause of your problem. I can understand that this is frustrating.
Although spinal myoclonus can be difficult to treat, some drugs such as clonazepam, antiseizure medications, tetrabenazine, etc., ialone or in combination may be effective.
If your condition is not getting any better, having a fresh look may not hurt. In case you live near Cleveland and can make it to the Cleveland Clinic, movement disorder specialists Drs. Burns and Mongomery would be most happy to assess your problem. Appointments can be made by calling (800)223-2273,or (216)444-5559 locally.
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