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Myoclonus and vitamin deficiencies

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Unread 12-15-2009, 07:31 PM   #1
Amy Jo
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Join Date: Dec 2009
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Default Myoclonus and vitamin deficiencies

I am glad to be here. I have a two and a half year history. I started off twitching pretty hard at night when trying to fall asleep. The first neuro I saw to me he could give me meds for Restless Leg Syndrome, and I should take a Yoga class. I have since been to Internists, Endocrinologists, 2 more Neurologist, etc. Symptoms have included stimulus sensitive myoclonus, fatigue, sleep disturbances, shortness of breath, tachycardia, loss of speech, itching and numbness and tingling sensations, low body temp, hair loss, irregular menstruation, etc. I have been to Cleavland Clinic, myoclonus is non epileptic. All of my labs have allways come back normal, with a couple of small exceptions, slightly high cholesterol, low aldosterone, low carbon dioxide. A month ago I was speaking to a friend who was asking me about my triggers for the myoclonus. I told him the long list, and told him how much better I felt when in the sun. He told me I should take vitamin D...so I did some research...Started taking 3,000IU per day. The very first night, I did not have any twitching. I did not need any Ativan that night. I have since found out that vitamin B is low, within normal range at 300, but low enough to still have an effect too.. I am so excited to finally be getting some answers instead of doctors pointing fingers at me telling me to take Yoga!
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tamiloo (12-17-2009)
Unread 12-16-2009, 01:14 PM   #2
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Welcome to Neurotalk, Amy Jo! I'm so glad you found us!!

This is such a great place with lots of caring, friendly, and helpful people. Feel free to jump in anywhere it suits you.

This is link for the Medication forum, where you may find some answers:


Otherwise, look around at the different forums. I wish you all the best.

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tamiloo (12-17-2009)
Unread 12-17-2009, 01:08 PM   #3
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Welcome Amy Jo! I have a niece with the same name!

Neuro Talk is the best place to be if you have unanswered questions...feel free to check in anywhere you want!!

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Unread 12-20-2009, 03:39 PM   #4
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I have had similar jerking for years, and hsve also been told that they did not indicate an underlying problem that they normally occur when going to sleep. Normally I would also hiccup once in addition to random body jerks. Later, I had the hiccups from early evening until late afternoon the next day. When I told my neuros about this, they said there were too many causes for hiccups, and my condition was not worth investigating.
Well, of course it wasn't worth their time, they were not hiccuping. Eventually, the jerking and hiccups went away. I take a number of antiseizure meds, and I guess they now prevent the jerks (no, i not referring to the neurologists I saw, even though they were jerks.)
Like most neurological problems, you hve to keep seeing a new before you get help.
I spent eight years tracking down my disease, cadasil, which affects 400 families worldwide. I have never been to a doctor who has treated someone with cadasil before, but maybe that was fortunate for me, who knows. My seizure problems were solved after a year of falling...it ended up being a blood pressure problem.....not being able to pump enough blood to my brain due to damage to valves from diabetes I think.
At any rate, given the severity of the symptoms I have, from vascular dementia, to peripheral nerve damage, and so on, I ignore the minor problems my body has, and would suggest you do the same thing. Or try to, at least; you never know what is coming next.
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