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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 1 day ago | Replies (552)

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@ray666

It appears this topic has been left untouched for quite some time. It seems an excellent topic, especially for someone like me who has had his first visit to a neurologist only this past Monday. Although I've yet to receive a clear-cut diagnosis, I would welcome hearing from others what their early "suspicions" were, suspicions that eventually led to a peripheral neuropathy diagnosis.

For me, long before I even heard of PN (ten years ago?), I noticed that myusual good balance was going wonkers, especially at low-light times of day (dawn, twilight). I hadn't had any falls, or at least none that I thought might have been the onset of a Big Problem. Doctors, of course, always ask if you've balance concerns. If I answered 'yes,' the response was ordinarily along the lines of 'Ah, vertigo!' or "Dizziness, I see.' I'h have to protest: 'No, no, I've never felt dizzy. The room was never going round and round.' I found it maddening to come up with the right words to describe the sensation. Eventually, I did––or I came as close as I probably ever will: 'It feels like I'm walking on a ship's deck in a rolling sea––not a storm-tossed sea, just a rolling sea–––and I have a tough time walking a straight line.'

Over the years, I've seen many physical therapists. Even though they'd nod when I'd use mu rolling sea analogy. I'm convinced they thought 'Ah, vertigo!––or (sigh!) old age. (I'm 76.) It's been a long haul, leading up to my finally seeing a neurologist. Although I've yet to receive a diagnosis of PN, I know that's what she suspects. If it turns out all I have is old age (no surprise there), I'll be a happy camper. If it is PN … well, that's why I joined this forum.

Wishing you all well!
Ray

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Replies to "It appears this topic has been left untouched for quite some time. It seems an excellent..."

At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a guest speaker - an 80+ year old neurologist from the University of Minnesota - 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy - from the idiot neurologist who diagnosed it. 😁

Notes from the 2018 meeting

Shared files

16Sep17_MN-Neuropathy-Assoc-20yr (16Sep17_MN-Neuropathy-Assoc-20yr.pdf)

@ray666 My first indication that something was going on was a tingling sensation in my feet and legs. After some time I went to the neurologist, who did a nerve conduction test and determined that I had pn. Over the past ten years, the diagnosis has been refined as it moved on to pain, then burning in the balls of my feet, and slowly included the tops and bottoms of my feet. Several months ago pain moved up into my ankles. Tingling and pins and needles have been the first sign in each area, and those sensations now are above my knees.

There are quite a few kinds of neuropathy, with different symptoms. I don't know if balance is typical of pn, but for me, it's one of several signs of another neuropathy, autonomic neuropathy.

Have you had other symptoms beside balance? What tests did your neurologist do? I like the way you described your "vertigo" as standing on a ship. I need to remember that because I have a hard time describing it to my doctors.

Jim