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Old 01-08-2017, 11:36 AM #6
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ElaineD ElaineD is offline
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Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
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Hi Porkette,

I wonder how you chose this user name? Interesting.

I take the Neurotin for the nerve pain of Small Fiber Neuropathy. These are nerves in my skin that are damaged by my Immune Disorder. The damage causes sensations of pain, burning, stinging, itching in my scalp, face,lips tongue mouth, throat and chest, ears, neck, arms, hands, fingers and palms.

The sensations are always there, cannot be fixed, and only Neurontin or Lyrica will stop them.

I do exercise in warm water a couple of times a week. Surgery fixed my back pain, so I do the exercise for flexibility and cardiovascular health. I have profound Peripheral Neuropathy in my legs (the main nerves are 'dead' from attacks by my Immune Disorder). I wear braces, which helps me to walk a bit.

We live in North Carolina where there is no medical marijuana allowed. Alas.

I will suggest Vimpat to my Neurologist after he thinks we have given the Depakote an adequate trial.

I have had two EEGS in the past three years as well as many MRIs and CT scans. I think my Myoclonus is what is called Primary Progressive Myoclonus of Aging (I am 74). I don't think there is any cure. But I would like the seizures to stop. Especially the Negative Myoclonic seizures where I collapse to the floor.

I'll keep you posted, and thanks for caring enough to send your ideas to me.

Hugs, ElaineD
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