What to ask a podiatrist?

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

@njed Good morning, Ed!

Yes, it was definitely a good meeting with my podiatrist. He's a straight shooter, and I respect that. And I believe he respects me. I could tell he was pleased to see I'd been studying up on neuropathy and able to ask the sorts of questions to which he was able to respond.

I did fake it just a bit when he said, "You realize, Ray, that we've no cure for what you've got," turning to look back at him and moaning, "WHAT? No cure? OMG!" That was my attempt to show my doctor that I could be a straight shooter, too. I like thinking of the two of us as partners in the crazymaking business of caring for me and my idiopathic neuropathy. LOL

More to say, Ed, but I need to get to work. Here's wishing you a fantastic day …

Cheers!
Ray

Hi, Debbie

My podiatrist said he was reluctant to recommend any particular shoe, but to try different shoes until you find a brand that works best. Years ago, when I was running daily, my podiatrist back then (not the same one) was a big fan of Brooks Addiction. For the longest time, they were all I wore, and not for running but for going everywhere. But as I've aged (did I mention that I've aged?), I found the Brooks to be too heavy. I needed lighter shoes. I can't remember the different brands I tried, but eventually I came across Nunbush (through Zappos). They're not perfect. But then again, neither are my feet! LOL

Ray

Hello again, Debbie

I realized when I said that my doctor's suggestion was to "try different shoes" how terribly expensive good shoes can be! Like many of us, I have to watch my pennies. For all I know, my "perfect" pair of shoes may not be Nunbush. My "perfect" pair may still be floating out there in the ether. But I can't just keep auditioning shoes, not with today's prices. My Nunbush are pretty good, so, at least for the time being, I'll stick with them. If and when my PN gets worse, I'll go back to considering different shoes.

Ray

I love it when a doctor actually listens. How nice to know that you have understanding and honest medical support when you need it.

A doctor who listens? It takes a special breed. Although, I'm sympathetic. As I leave any of my doctors' offices, I'll see my doctor hunkered down in a corner, typing furiously on his laptop, trying furiously to keep abreast of his day's paperwork; he'll glance at the wall clock to see how many minutes he has before his next patient is waiting in the exam room, huffing and puffing and wondering why the doctor is late. It may be more of a problem in my doctors' offices, but it seems to me there's something self-defeating about a system that keeps doctors running like hamsters in a revolving cage. My podiatrist is special, however, I will admit that. I value him for his patience.

@ray666 - Hi Ray - since our symptoms are somewhat alike (although I can't walk in my bare feet due to drop foot), I wanted to let you know that my early diagnosis was strictly on the sensory side, no motor issues, no balance problems. As it progressed (gotta think back)...as the sensory became more intense with increased numbness, the gait became an issue as did the balance, etc. When the neurologist at Mayo told me there is no cure for my neuropathy, it was not a shock to me but a surprise because all along, I thought it was my back or knees causing my neuropathy. What I didn't realize back then that I have now come to realize is how this can impact our lives, our ability to do things. I still do many things I did 5 years ago only in a different way and it takes a little longer which is fine. To steal an expression - "Cheers" !! Ed

Oh, boy, do I know what you mean about having to do things in "different ways." A snapshot from only yesterday: I met a friend for coffee. When I got there, I spotted my friend in the faraway rear of the coffee shop. And, of course, the coffee shop was packed, the customers zigzagging around like crazed electrons. It took me forever to pick my way through the crowd. Then when I got to my friend and sat, my suspenders popped. I couldn't stand and safely balance myself so I could reattach the suspenders. My friend had to come around and do it for me. We had a good laugh about this –– but oh, all the little adjustments we people with PN have to make each day!

My best PCP ever has pretty good dictation software and was so good that I had a paper copy of my visit notes given to me by her nurse at checkout! Any mistakes in them a”we’re trivial, even sometimes humorous like when you ask Siri or Alexa something. I think it’s good when doctors do their notes in the minutes between patients (that’s hopefully part of their appointment scheduling system). When I have to wait 1+ weeks for visit notes to post on my portal, there’s a tendency for more errors or omissions. If I waited until the end of the day or later to summarize my workday, my memory would not facilitate good reports! Boy has the medical system changed - I guess it’s had to in order to keep up with patient expectations and accountability now, and understand how cost constraints make it hard for them to keep up.

Yesterday I went to my my first (crowded) sports venue since the start of my PN. I was nervous, cane only, and logged a record number of steps for the day (4x average). It was absolutely amazing how people helped me along the way even with my husband there. Stepping off curbs, letting me ahead in lines etc. On our long way out of the stadium, one friendly chatty man took it upon himself to tap everyone’s should ahead of us to politely clear the way for us. For my safety. ( I think he was a bit inebriated as were some of the off balance people ahead of me, unless they too had PN or something 😊). I just think on the most part people are genuinely caring and want to be helpful!