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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Oct 17 5:52am | Replies (571)

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@johnbishop

Hello Aaron @aaroncush, Welcome to Connect. Wished there was a simple answer that would help. Doing your own research and being your own advocate is the one thing that each of us can control. You are not alone in your journey. I'm pretty sure we all started out thinking there was a magic pill that would make it all better. I posted my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy has a great list of treatments that you might want to read through to see if they might be helpful including complementary and alternative treatments and a list of supplements that promote nerve health here -- https://www.foundationforpn.org/treatments/.

You mentioned the symptoms came on all of a sudden. Do you have any other medical conditions that could be related like diabetes?

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Replies to "Hello Aaron @aaroncush, Welcome to Connect. Wished there was a simple answer that would help. Doing..."

No diabetes. Here is a quick list of all major stuff:
Stroke @ 6 months old causing cerebral palsy - mild right side spastic hemiplegic.
Diagnosis @ 17 of Fibromyalgia - later confirmed by a specialist in my 20's.
Diagnosis @ 20 of intestinal pseudo-obstruction
Diagnosis of CRPS on my right foot after 9 surgeries around 2010
Diagnosis of MCAS in 2016 after sudden onset food allergies, chemical sensitivities, drug reactions, and dry flushing
Notation that my brain tonsils are peeking out of my skull and my brain has settled crooked due to the difference in mass between left and right sides - this is causing my brainstem to be impacted - no fix available. Definitely causing my extended bouts of nausea (lasting days at time) and originally thought to be causing the left sided nerve pain until steroids calmed everything down. For reference I am 51 currently.