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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Jan 8 7:56am | Replies (6210)Comment receiving replies
Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @egayle187 @jenniferhunter @suzylulu and other members have discussed similar symptoms of feelings like bugs crawling around under the skin and electric shocks and may be able to share their experience with you.
I also take supplements to help with my idiopathic small fiber peripheral neuropathy. I shared my story in another discussion which you might find helpful - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/
You mentioned you believe your neuropathy may be related to your service deployment in the middle east. The VA has some information that might be helpful if you have not already seen it - Airborne Hazards and Burn Pit Exposures: https://www.publichealth.va.gov/exposures/burnpits/
Do you mind sharing what supplements that you are taking and if you are also taking any medications to help with your neuropathy?
Replies to "Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences,..."
John, I am taking many over the counter supplements; Alpha Lipoic acid, L-carnitine, Turmeric, Omega 3,6,9, Vitamin D, CoQ10, B12. Up to this time I have refused to take Gabapentin or Lyrica, because of there side effects.
Hi Scott,
I am relatively new to mayo connect (about 6 days ago) and I was given the same identical diagnosis by Mayo in MN. I said axonal what?? My motor skills in both legs is the biggest challenge. Mayo told me not to take Lyrica and Gabapentin created angry issues. I find it frustrating because I do not know of anyone else that has this and I reside in a low populated beach community. No known cause for me means no treatment plan. Most things, I've found out on my own. Neurologists kind of shrug their shoulders. So, you are no alone with this and I hope you can manage through this. Not easy, that's for sure.
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John, Thank you for responding to my post. The information on the VA sight is minimally helpful, since I have already accomplished registering on the airborne hazards registry. I have been through the VA system since I retired in 2013 and have had no resolution to the diagnosis of idiopathic sensorymotor peripheral neuropathy. I am hoping to find out what caused my neuropathy and then a more focused treatment, not just treating the symptoms. I would like to keep PN from progressing up my legs and arms.