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Living With Large-Fiber Neuropathy

Neuropathy | Last Active: Mar 6 4:20pm | Replies (35)

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@njed

@dbeshears1 Debbie, I believe your approach to this is absolutely on target. Each one of us with PN know our own body. We know when things aren't right. My primary doctor, not neuro doctor ordered an MRI of the brain in 2015 and a follow up in 2018, all good. Little humor: She called me and said, "there's nothing there". We both laughed. As we know, in medicine, doctors will usually want to rule out the worse things first. After going to six various neurologists since early 2015 in four different states, I've come to the obvious conclusion that there is one heck of a lot of information about PN that doctors just don't know. I agree with you. I've learned more about my PN from others with PN. And, reading your various posts, you did have some unusual circumstances involving your onset of PN and no doubt, both small and large. I'd assume that as well and seek best treatment, if any, going forward on that basis.

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Replies to "@dbeshears1 Debbie, I believe your approach to this is absolutely on target. Each one of us..."

"Little humor: She called me and said, 'There's nothing there'."

Love it, Ed! A funny one happened to me and my partner Mell, only mine involving a CT scan, a few years back when I fell and hit my head while on an Aegean cruise. (PN-related?) The ship's doctor advised that my partner and I spend a few days at the tiny hospital on the isle of Limos so that I might be evaluated. One step in that evaluation was the CT scan. When the scan was over, the technician, whose English wasn't the greatest, marched into the waiting room where Mell had been sitting and said to her, "Ez good news. You partner, ez head is full of brain!" Thank, Ed, for reminding me of that moment!