Well, it's been another 9 months, with not much to report. The myoclonus continues and has even started to happen bilaterally/simultaneously. I also have some signs of nerve demyelination of my arms and legs, according to my neurologist, so starting the labs and testing for MS (apparently I have other symptoms of the disease too - I know there are MANY!). Oh boy, not what I want to hear - although it sure would explain a lot! Did blood work and scheduled for LP and brain/spinal MRI's.
Currently taking Topamax 50 mg BID and Clonazepam 1 mg/day with continued myoclonus (as well as other meds). Also having burning/tingling sensations in both arms, bilateral TOS symptoms, bilateral numbness to feet, ankles, and up to knees, bladder issues, fatigue, anxiety, and depression. I pray that all of this is just side effects from the medications I take . . . I guess time will tell with new workup.
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Originally Posted by o2bponca
Thank you so much for the great information you gave me on your reply to my post.
Since my last post, I've seen a neurologist, quit two medications that may have contributed (in addition to being completely off the Baclofen for several weeks now), and had an EEG last week as the myoclonus continues.
I've been taking Clonazepam with good control, but I can tell they're still there. However, they are so minor, they almost seem "internal" or like muscle spasms that only I'm aware of. My main problem with them is that I'm a transcriptionist by profession and often my finger will need to type an "e" but suddenly jump over to type a "b" (nowhere near "e"). Other than that, they don't cause many problems for me.
My EEG interpretation states: Abnormal EEG in awake and drowsy states. Normal EEG in sleep stage. There is electrographic evidence of polyspikes w/o epileptiform evolution in frontal lobes bilaterally. Clinical correlation recommended for evaluation of nonepileptic myoclonus.
Doctor has suggested to continue the Clonazepam for 4-6 months and feels the myoclonus may go away altogether. Will re-evaluate at that point. I am very hopeful !!!
In the meanwhile - thanks again. You are all in my thoughts as I've spent many hours on this site learning and communicating with my friends here.
Have a great day!
Carrie
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