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Ray,
My husband suffers with neuropathy very similar to yours with gait imbalance, funny walk and rubbery legs etc. We follow your posts closely. He does have a few episodes of unbearable pain when walking that come on sporadically and his foot gets swollen but he is usually with out pain unless he is on his feet alot. We have made an appointment with a podiatrist at my urging that isn't until 7/6. I told him he looks like he has a claw foot/feet. He was diagnosed with idiopathic, primary axonal polyneuropathy by a neurologist last year. This is such a hard condition to navigate and the neurologist only seem to want to dole out medication. We appreciate this websight for all the good suggestions and comradery of fellow sufferers! Best- Debbie and Scott
Replies to "Ray, My husband suffers with neuropathy very similar to yours with gait imbalance, funny walk and..."
Good morning, Debbie and Scott,
Nice to meet you! Yes, it does sound like Scott's neuropathy is a close match for mine. My diagnosis was idiopathic sensory-leaning axonal polyneuropathy. So, except for the sensory-leaning: definitely a close match.
The one symptom I don't have – at least not yet – are episodes of intense pain while walking (of course, I can do much less walking these days than I'd like to).
You noted, too, that I have swollen feet. They used to be more swollen. My primary doctor noticed the swelling several years before I was diagnosed with peripheral neuropathy. Neither of us could figure out why I might retain water, but she suggested I wear compression stockings. I did for a few years, but it was a hot summer, and the stockings didn't seem to make much difference. Only recently, though (a month ago?), I started wearing the compression stockings again. I still have swelling, but it's minimal.
This is a hard condition to navigate, as you say. Luckily, I've got a good bunch of doctors. I say "bunch," but I used to have more. That's something I've noticed about folks with one of the many varieties of neuropathy: we tend to amass doctors. LOL, I had to pare down. I've kept my favorites; by "favorites," I mean those who are honest with me (like my experience yesterday with my podiatrist).
And I'm a big believer in self-education, especially when faced with an imponderable like idiopathic neuropathy.
I'd like to say more, but I see it's getting close to my work time, so I'd better shift gears (and get a new pot of coffee going!).
My best to both you and Scott.
Cheers!
Ray
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Hello @philkill4, I thought I would jump in and add my welcome to Connect along with @ray666, @dbeshears1 and others. Neuropathy can be a difficult condition to navigate and it definitely pays to learn as much as you can about the condition and different treatments that may provide some relief. If you haven't already seen this site, you might want to save it for learning more about the condition and how to manage it.
--- Foundation for Neuropathy - Living Well: https://www.foundationforpn.org/living-well/
I wear compression socks daily to control the swelling in my legs and feet. I also have lymphedema in addition to my neuropathy. Is it just your husbands feet that have the swelling or is it the legs also?