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1156914 tn?1300571629

Spinal myoclonus that seems to be getting worse

I'm a 21 year old femaleand I was diagnosed with spinal myoclonus in April 2009 by my neurologist and it was backed by a 2nd independent opinion in July. We did extensive testing, which included MRI scans of the brain and spine (with and without contrast), EEG, EMG, a lumbar puncture and extensive blood tests, to try and find the cause but there was nothing abnormal. The neuro started me on 300mg Epilim (Depakote) morning and 500mg night. The medication works for a month or 2 but then the dose has to be upped as the twitches (in my abdomen, it almost looks like I'm doing stomach crunches) keep on coming back. In September, when I was taking 700mg Epilim morning and night, I was admitted into hospital with suspected valproate toxicity. I say suspected as I had all the "classic" symptoms but the levels in my blood were within the normal range. Repeat MRI scans and EEG came back normal. I was discharged with a prescription for 500mg Keppra morning and night, 300mg Epilim morning and 500mg night and 5mg Urbanol (clobazam, to help with sleep as the twitches were so strong I couldn't fall asleep) I'm now on 750mg Keppra morning and night, 500mg Epilim morning and night and 10mg Urbanol (only if I struggle to sleep) We have tried Rivotril (clonazopam) and even upped it to 2mg but it had no effect whatsoever. Could you give me any reason why the myoclonus is getting worse, as my neuro and her more senior counterpart are completely baffled by this. Thanks, Vicky
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1156914 tn?1300571629
Just another question, what are neurometabolic disorders?
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1156914 tn?1300571629
Thanks for replying! This is the first time that anyone has ever given me an answer to this question and I have posted on many forums before this one. We intend on running further tests in the near future because my neuro thinks maybe its something that we weren't able to pick up so early. Thanks once again for replying
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Avatar universal
MEDICAL PROFESSIONAL
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what your symptoms are from. However, I will try to provide you with some possibilities

Spinal myoclonus can be of many causes, including structural lesions in the spine, in some cases peripheral nerves (if the myoclonus is segemental) or due to some rare neurometabolic disorders. In general, in studies of spinal myoclonus, symptoms have not progressed but rather remained stable or improved.

A progressive myoclonus would suggest progression of the underlying disorder leading to it, such as an ongoing metabolic disturbance. However, in studies of patients with spinal myclonus for which a cause could not be identified, particularly when it is getting worse, stress has sometimes been found to be either a cause or a contributing factor, and addressing underlying stress and anxiety, best with the aid of a psychologist, is important.

Thank you for using the forum I hope you find this information useful good luck.
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