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Aug 19, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

Has anyone in the group had experience with a simulator? I’ve tried a lot of different devices and drugs and nothing seems to work well (or in the case of drugs the side effects have been so bad I had to stop using them).

Apr 12, 2019 · People with non diabetic neuropathy in Neuropathy

Thank you Jennifer and John, you both given me very good advice and recommendations which I will definitely follow-up on. This is precisely why I joined the group. Jack

Apr 12, 2019 · People with non diabetic neuropathy in Neuropathy

I recently joined this group, but this is the first time I’ve posted.

I have “non-diabetic” peripheral neuropathy a condition I’ve endured for more that 20 years; however, for 15 years I had no idea I had neuropathy. I am retired US Air Force and for the past 14 years have been a competitive cyclist over both short and long distances. I have and can endure considerable pain and shrug it off as the price of vigorous exercise and growing older (I’ll be 79 next month).

About 5 years ago, after complaining to my family doctor, I was referred to a pain specialist who made the diagnosis after performing a nerve test on my legs (EMG); however, I refused to take any prescription meds as I feared the side effects would impact my cycling so I just soldiered on with the pain (remarkable how people can accommodate considerable pain as part of their daily life). Ignoring the neuropathy ended a couple months ago when I stood up after an hour meeting and nearly fell over as I had no feeling in my feet. I immediately thought of what will happened to me in the immediate years ahead. Thus, consulted with a pain specialist.

My current pain specialist prescribed gabapentin and also thought perhaps my spine was playing a role in the neuropathy because, (a) I don’t have diabetes; (b) when I’m riding my road bike, in the normal hunched over position, I have no pain; however, (c) when I free style swim the pain in both feet immediately becomes so severe I cannot even swim 25 meters.

I took myself off the gabapentin after a month as the side effects were too severe. I did not trust myself to drive, could not safely ride my bikes, and I felt like I was in a constant daze (I prefer the pain over those side effects).

An MRI of my spine was done and yesterday I had a consult with neurologist who specializes in spinal problems. No problems with the spine. He in turn referred me to a neurologist who specializes in the treatment of neuropathy (appt. is scheduled for 5/29).

Sorry for the long winded personal history but wanted to share as perhaps fellow suffers could suggest a med without side effects and/or provide useful advice living with this dang problem that is having a very serious negative impact on my life.