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Old 02-14-2018, 03:06 PM
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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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I'm at eight years and counting. But my FIRST diagnosis was profound PN. And I still have it. I've also added Small Fiber Neuropathy, about three years ago.

I can feel the cold tile under my feet in our bathroom and I always have. But I walk with both leg braces and a walker. Two of the three major nerves in my lower legs are profoundly ('dead') damaged and the third is severely damaged.

I have had every single possible test (heavy metals, genetic, spinal tap, MRI of entire spine, etc) and no cause has been found. My orthopedist (Duke affiliated) said last week: 99% of PN cannot be stopped/cured, and over 60% is idiopathic.

I take 3600 mg gabapentin a day for my SFN (skin on fire sensation). I recently started LDN (Low Dose Naltrexone) for pain, and it works amazingly well. I seem to be acclimating and the side effects are lessening.

The chances for remission/cure for PN are very low,, very very very low. Most websites will not say this, they will talk about physical therapy, whatever 'cure' they are selling, and diet and exercise.

Diet and exercise will make you feel better, for sure, physical therapy (which I have had four times in 8 years) will strengthen you, and a balanced diet, high in protein and low in carbohydrates will give you energy and even out your highs and lows.

I wish I could write a success story. My success is in coping well with what has been my lot in life....a very complex Immune Disorder.

Regards, ElaineD
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