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Old 08-12-2011, 05:30 PM
NeuroNixed Craig's Avatar
NeuroNixed Craig NeuroNixed Craig is offline
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Join Date: Sep 2006
Location: Richmond, VA USA
Posts: 501
15 yr Member
NeuroNixed Craig NeuroNixed Craig is offline
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NeuroNixed Craig's Avatar
 
Join Date: Sep 2006
Location: Richmond, VA USA
Posts: 501
15 yr Member
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Allow me to provide a little better perspective for you on my unique situation.

My neurological disease is Spinocerebellar Ataxia, but the boogie man is Cerebellar Degenerative Disease. Since we are dealing with atrophy and dying of the cerebellum, medications really have little effect and the pain meds are kept at a minimal level because I will not live in a drug induced stupor.

I have had several sleep studies revealing Restless Leg Syndrome and severe sleep apnea where I stop breathing up to 48 times an hour. I use a CPAP machine consistently no matter where I travel. The sleep disturbances are a result of the brain stem stroke, combined with the above diseases are very unmanageable without giving me such strong meds I am totally knocked out.

My blood labs are all in line including no heavy metals, B-12, Vitamin D, Thyroid, all of that has been checked and are fine. I do take a strong, wide spectrum daily multivitamin twice a day.

I am doing this inquiry on my own to get any ideas for my doctor to check out. I no longer see any specialists as they all agree there is nothing more they can do for me, literally. Thus, I'm looking for any options that may work under my circumstances. The Naltrerxone (LDN), Adderall, Adderall XR, 1,000 mg of acetyl L-carnitine and 200 mg of alpha lipoic acid daily, seem to have strong potential. I will research them on the Internet and review them with my doctor as I've not tried any of them.

Thank you for all of your suggestions. I will now follow up and see what happens. As you can see, the combination of health challenges including the final prognosis, make all of this very difficult. I will keep you informed.
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