My PN? What do you mean it's "progressive"?

I'm sure this has been asked many times before, but as my diagnosis was relatively recent (last August), I'm eager to know what signs and symptoms I must watch for. I'm 78. I was diagnosed with idiopathic peripheral neuropathy (not much more known now than that). My only symptom is poor balance, which may be getting worse but at such an incremental and near-invisible rate that I can't be sure. I have no pain, none at least that I can link to my PN. Often, after an exercise session (stationary bike cycling, stretching, balance work, etc.), my legs may feel weak-ish (my knees, in particular), but the feeling, having been a distance runner most of my life, is a familiar one; I can't honestly say it's because of my PN. What should I be watching out for? If my PN is progressive (and I can't be sure of that, not yet), how fast should I expect it to progress? I meet with my neurologist next in early August, and I'd like to give him a good and specific rundown of any progression I may be experiencing. Hearing from others will be invaluable.

Hi Ray, I also have idiopathic small fiber PN which really started in my 50s and I'm 80 now. Started with numbness in my toes on both feet and gradually worked up into my feet and lower legs over the years. My PCP told me it was probably neuropathy but with numbness there weren't any treatments that were going to make the numbness go away so I didn't bother with getting a diagnosis until I started worrying about the progression in my early 70s. Progression can be slow like mine was or like others have shared happens overnight. My own opinion is that the only thing that we can do is make lifestyle changes that will possible slow or stop the progression. I do think exercise and a healthy diet are a big help along with what you are doing... learning as much as you can about the condition. Kudos to you!

Thanks, John!

I'm keeping up with my at-home exercise (I could always be doing more) and being strict about eating a good diet (credit goes to my partner for that; she's a cook-from-scratch wiz), mostly because––with what little any of us (doctors, patients, et al.) know about our idiopathic PNs, what else can I do? I have to keep fighting the good fight, because … well, again, what else can I do? Some sort of exercise + a good diet––and education! I almost forgot about education. I'm learning a lot from the Foundation for PN's videos (webinars). It may not "cure" my PN, but it may at least make me a fellow who asks better questions.

Let me say, too, John, how much I appreciate your interest in our gazillion posts and the many, many helpful things you say. It's good to know you're "out there"!

Cheers!
Ray

My signs of “ progressive” have to do with a very gradual decline in activities and a very real increase in my disabilities. Facebook memories is very good at showing just how quickly I’ve deteriorated in the last couple of years. And really fast in the past year. Things I was enjoying a year ago: hiking weekly, some kayaking, my spring gardening (as always), and visiting my sons in NYC, which I’ve done by traveling alone for the past 10 years. I just got back from NYC, it was a grim test of perseverance this time, and I told my sons it was probably my last trip. Just before I read your post, I was wondering (again) why I don’t start my morning out on one of my lovely porches, and realized that it’s because of pain - I require the recliner and heating pad to start the day.
I am 62. Certainly not how I had planned to live at this age! Ray, you sound like someone I would enjoy having a cup of coffee with! I would say do a little mental inventory and ask those around you what they’ve noticed.

I am not at your level of disability yet! You sound like a very brave person! I want to be able to travel again. Last year, I ended up in a wheelchair ♿️ after traveling to Detroit. I was visiting a great friend! She did not mind wheeling me around in a wheelchair! I want to be able to go again! I have worked hard to increase my strength and balance! I want to travel again. I look at it now as a challenge I can't wait to try! Thanks fir your note, Pat!

Pt, exercise, exercise, exercise! Do whatever you can, to keep moving. Hope this helps! Pat

Good morning, @julbpat

You say that your signs of progression are a very gradual decline in activities and a very real increase in disabilities. I'm afraid my signs are similar on both counts: decline in activities, and increase in disabilities. In rereading what I'd written yesterday, I felt I'd underplayed my concern about both signs, which I'd not wanted to do, but, oddly enough, it appears I did anyway. I'll admit that it's my nature to put a humorous twist to everything; for example, my having made light of how illegible my handwriting has become. I'm a daily journal writer (by hand), and an hour ago, I paused while journaling to reflect on how poor my handwriting has become. This wasn't something I'd only noticed recently; I'd been seeing it for years, but shrugging it off, telling myself, "Oh, don't worry, Ray. You've got a lot on your mind, that's all." But a month ago, my neurologist asked if my handwriting had grown worse recently. I laughed it off: "I've always had poor handwriting." But that wasn't true. My doctor was looking for signs of progression, and I hid behind a joke. I'm pretty sure my increasingly illegible scribbling is a sign of the progression of my PN.

Similar to what to describe, I also enjoyed a host of outdoor activities: mountain trekking, cross-country skiing, off-road cycling––all activities I've since had to give up. For years, my partner and I rented a mountain cabin, which only the year-before-last we gave up, convincing ourselves it was because of the fire danger (which was real); in reality, it was me and increasing inability to manage even the uneven ground surrounding the cabin. (I'd become jittery about walking even the 200' path––sharply downhill and rocky––from the cabin to the outhouse. If that isn't a sure sign, what is? LOL)

Ah, NYC! My hometown––or my former hometown. I was born and raised in NYC. My sister-in-law and a half-dozen nephews and nieces still live there, not in NYC but in Rockland. I used to go back regularly, but not so lately. My last visit was pre-Covid. Since then, I've had to consider my increasing balance problems. I've been telling my family, "Maybe next year." But if my PN symptoms worsen, there may never be a "next year."

You also sound like someone I'd enjoy having coffee with. Shall I start a fresh pot? Do you like your coffee black? Or "reg'lah," as we used to say on Second Avenue, with a splash of milk?

Ray

Good morning, Pat (@paktoledo)

Travel! That's been No. 1 or 2 on my New Year's Resolutions list every Jan. 1st. With my PN, I'll have to move travel down a few rungs for 2024. If I let my guard down, I'll begin to feel cheated: how I'd waited all these years to travel, and now that I'm retired (or at least semi-retired and working from home), I have the time and a little saved to do all that travel I've been dreaming of doing, but along came PN! However, I don't let my guard down; I take things in stride (fortunately, I've always been that way). I will travel again, although I may need to make certain accommodations.

I applaud your follow-up post yesterday: " … exercise, exercise, exercise!" I do: my daily regimen here at home, following an online balance program, to which I've added a smattering of strength and flexibility training. And, as coincidence would have it, I'm about to phone my neurologist's office. He's a physiatrist, or a physical rehabilitation specialist, with a staff of physical therapists trained to help people with PN. I'm going to ask to meet with one of his therapists. So, yes, exercise, exercise, exercise!

Cheers, Pat!
Ray

In rereading the post I left yesterday about the signs of PN progression, I see I was too easy on myself. It's my nature to err on the side of the "least concerning." I made light of my dropping things and poor handwriting, as though I was wanting to give the impression that these everyday Ooops! weren't new and, therefore, nothing I need to be worried about (or, in other words, they're not signs of my PN getting worse).

In truth, I am worried––or not so much "worried" as feeling more and more sure that they are signs of my PN getting worse. The need to be 100% honest about these things is heavy on my mind because I'll be meeting with my neurologist in a few weeks (a meeting I requested), and I want to be 100% honest with him about not only the symptoms I'm sure of (my lousy balance and wobbly gait) but also those I'm now beginning to suspect of being true signs of my PN getting worse. I don't want to evade the truth. After all, what's to be gained by that?

I remember how, back in my drinking days (well over 30 years ago), when a doctor would ask how many drinks I'd have in a week's time, I'd fib ("Oh, maybe two or three"). It didn't do me any good back then to duck the truth; the last thing I want to do is duck it again when it comes to my PN symptoms.

Ray (@ray666)

My PN is definitely getting worse. but it could be caused in part by my recent prostate surgery. Prior to COVID my wife and I used to spend our summers in Maine and go on a couple cruises every year.
Since COVID no more travel. Using a walker I have a hard time walking one block. Inside the house I can shuffle around without a cane but not so outside the house. I am now 86 so I blame some of the decline on my age but how much I don't know.