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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@alanhny

I've had it for three years and it has gotten progressively worse. I can't tolerate standard medication like Lyrica, Gabapentin, blood tests up to now haven't been helpful in identifying cause. Will be having more blood tests and spinal tap but getting pessimistic tht this will remain idiopathic with my ending up in a wheel chair or worse--Alan

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Replies to "I've had it for three years and it has gotten progressively worse. I can't tolerate standard..."

Hello Alan (@alanhny) -- have you seen a neurologist? I have no medical training and background but I'm not sure that just because your neuropathy could be idiopathic is that big of a deal. There are lifestyle changes people with neuropathy that can make living with neuropathy easier. The Foundation for Peripheral Neuropathy has some good information that may help here:
-- https://www.foundationforpn.org/living-well/

The National Institutes of Health - Neurological Diagnostic Tests and Procedures Fact Sheet may provide some information to help understand the different tests for neuropathy:
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Neurological-Diagnostic-Tests-and-Procedures-Fact

My biggest fear was losing the ability to drive due to the neuropathy progessing up my legs. My hope is in research finding methods to help repair nerves. Currently all the drugs and medications do is block the pain signals and do nothing to fix the problem - damaged nerves. The drugs also come with many severe side effects that can be as bad or worse than what they are treating (IMHO). So I'm always excited when I see new research even if I know it may never be available in my lifetime. I'm hopeful for others. I just ran across these that offer some hope:

Repairing the Neural Highway by David Holmes in Nature Outline, Dec 13, 2017:
-- https://spinalcordresearchandadvocacy.wordpress.com/2017/12/14/repairing-the-neural-highway-by-david-holmes-in-nature-outline/

Spinal-cord injury: spurring regrowth, Dec 13, 2017:
-- https://www.nature.com/articles/d41586-017-07550-9

John

Love your response - PN is what it is....no matter what the etiology! If you are willing to deal with the side effects of the drugs that can be prescribed, that's great. Otherwise - There are alternate ways to deal with the discomfort - even meditation - tho' it might take awhile to get your mind to that place.