Living With Large-Fiber Neuropathy

@ray666 Ray, as you know, I have large fiber as well and like you, I have no pain. I also have small fiber PN per Mayo in Rochester. I started with small and then developed large. I have found that using a cane is becoming something of a daily routine. I tried to hold off as long as possible but just going thru Covid, I found it necessary to use the cane as my balance was impaired but now slowly improving. The cane will provide confidence when walking. Since we can't fix it and have to live with it, you might find the cane will help with the wobbly feeling. I also do sit down - stand up exercise each day to maintain leg strength. I do about 15 of them 2 X a day. Stay well! Ed

Good morning, Ed

I hadn’t forgotten that you, too, have large-fiber neuropathy. However, I had forgotten you have a mix of the large and the small. Now that you’ve reminded me, I wonder if I, too, might have a mix.

And maybe it’s not unusual for those of us who have large-fiber PN also to have small-fiber, too.

I read with great interest what you said about how you use a cane. I’ve only lately emerged from the shadow of shyness about occasionally needing a cane. For the longest time, I’ve been one of those (possibly all of us, at least for starters?) who was “shy” about carrying a cane, as if I toted it under my arm like a riding crop people might think that’s just what it was: a riding crop. (Where’s that fellow’s horse?). The object was never to let anyone know I had a “condition” that might make carrying a cane necessary. (When we closed that last play I’d been in, and I confided in the director that I’d decided to “take time off” from acting because of my poor balance, she offered me a role in her next play in which, she said, hoping to comfort me, I’d be welcome to use a cane. I hemmed and hawed, eventually declining, saying I’d “travel plans.” Hogwash! The truth was I was afraid if people saw me come out on stage carrying a cane, they might think I NEEDED IT. Perish the thought!)

“I have found that using a cane is becoming something of a daily routine … as my balance was impaired but now slowly improving.”

I zoomed in on what you said about “now slowly improving.” Have you found that using a cane with more regularity (and not pretending it’s a riding crop!) has helped improve your overall balance? Earlier this morning, guessing that might be what you wanted to say, I used my can with a bit more deliberateness when I went down the pre-dawn path to fetch the morning paper and honestly felt more secure. It’s made me want to learn how to use a cane correctly.

This afternoon, I’ll be meeting with my neurodoc’s NP to review my recent genetic test results. I will ask her if a few sessions with a PT to evaluate my gait and teach me correct cane usage might be a good idea.

Thanks for your post, Ed! As you might be able to tell, you’ve got my mind a-churning!

Cheers!
Ray

Ray, sorry I wasn't clear on something. The now slowly improving had to do with the fact that I've been dealing with post covid issues and my balance, for some weird reason, was really off when the covid was at its peak and I had to use the cane all the time. Now that the covid issues are slowing subsiding, the balance is slowly improving. In short, at least my balance is returning to where it was prior to Covid when I did use a cane about 2/3 of the time. Again, I think your confidence will improve with use of a cane and I did google how to properly use one. Ed

Hi Ray…I’m heading towards 62…and started having symptoms 7 yrs ago . An EMG/nerve conduction study showed I had neuropathy. My Dr never specified what type…however if it showed on the nerve tests, I concluded it was large fiber neuropathy. I also have some autonomic involvement per testing, which tells me that’s a small fiber involvement also. The Dr that did nerve test stated that if you have one form there’s a good chance you have both.
I also have limited pain…the pain I do have is more joint and muscle. My legs feel like they are progressively getting weaker…And they tire easier. I can feel altered sensation in most of legs as well as hands. Like you my balance is affected also.
I walk 2-3 miles a day as well as do 20 min on an exercise bike.
I don’t know as I ve learned to live with it nor accepted it…it’s quite depressing at times…mostly thinking about how it’s going to progress. The other feature of this is the fatigue/lightheadedness that goes along with it.
I’ll be curious to hear the results of your genetic evaluation.
Best wishes to you.
Steve

@stallen My initial tests in 2015, all the doc said is you have peripheral neuropathy, not specific on small or large and I learned in 2017 with additional testing it was small. Then, in early Feb 2020 I was invited to go to Mayo because other things were taking place, tripping due to drop foot, balance was bad and other weird signs. They gave me a dx of small and large, no autonomic, no cure, no meds to help and no reason. In 2022, started with small signs of autonomic likely caused by small PN. Not having pain, I am thankful. Your ability to walk several miles a day, to me, is extraordinary and that might keep your progression on the slower side. Ed

Thanks for your reply Ed…best wishes to you
Steve

Btw I enjoy reading your comments that always seem sensible

Ray -
As you know, I’m in the Idiopathic LFN too, diagnosed by EMG in 2016 after 10 days of sudden gradual weakness put me in a wheelchair for 6 months. It also took my hands, but over 6 months of intense PT I was able to waddle, eat, wipe, and even drive again. So yes I have balance issues, but I can stand (with eyes open) for quite a long time. It’s my knees that usually get tired and wobbly because of how my brain signals and nerves aren’t wired to communicate with each other anymore, so my muscles do a lot of extra work.

I will use a cane on long jaunts, but my walker is my tool of choice because I can’t step, so a walker helps up and down curbs or other obstacles; my pouch on it allows me to have my female purse items & wallet with me (as we don’t have enough pockets), my phone, etc. The hook I have allows me to hang bags as I assert my independence in supermarkets, as carrying bags is a balance fall risk. I call my walker my “Swiss Army Knife” as it allows me to lean on it to reach high places or stoop/bend to get low shelves.

I have so many symptoms of SFN that I seriously wonder if I could also have that. But my last 2 doctors said No, without testing for it, because they believe you can’t have both. I’ve heard good young @njed and others say that’s not true, and I believe them. But I haven’t gotten a doctor to agree to do a SFN biopsy. I was recently approached by my PCP for genetic testing though that will look at other things.

I have the standard non-stop numbness, tingling, and loss of sensation. However, I also have pain that is well controlled by Gabapentin. It’s not an issue unless I’ve forgotten a dose. I usually will start feeling a deep internal ache in my lower legs and that will make me reach for Gabapentin which I take 3 times a day. I am pleasantly surprised when I realize I missed a whole dose without my body knowing it, but after 7 years I haven’t figured why that goodness happens so I can repeat it 🙂. But generally I’ve learned that if pain sets in, it takes a couple of cycles to get back to even keel, so I try not to let that discomfort set in. Deb

@dbeshears1 Debbie - Wow...I went from old to young in a week! Thanks. If you have a doctor who believes you can't have both small fiber and large fiber peripheral neuropathy, then they are welcome to look at my final test results from a series of testing that took place at Mayo in Rochester over a period of four days. The findings are conclusive and clearly state that I do, in fact, have both small and large fiber. It exists and still does. Ed

Hi, Ed

That was my misreading of what should have been painfully obvious: round-the-clock cane use, by itself, is not going to help someone’s overall balance––like putting faith in Mary Poppins singing, “A spoonful of sugar’ll make all your PN symptoms go away!” 🙂

My misreading did at least get me to be less shy about toting a cane and to wield it proudly. That, in itself, I consider a positive.

And it did prompt me to ask my neuro doc’s NP, when I saw her yesterday, if maybe a not-too-$$$ session with a PN-experienced PT might give me some much-needed corrective gait coaching.

Ray

Hi, Steve (@stallen)

I’m pretty convinced I, too, have a mix of large, small, and quite likely autonomic PN. None of my doctors ever gave his or her opinion straight-out; I had to ask, to get them to say, “Very likely.” I’m convinced however, that large-fiber is the valley’s biggest gorilla; for now, anyway, that’s how I’m announcing myself: “idiopathic, predominantly large-fiber PN” (not that I go around announcing myself).

My legs, too, feel like they are getting progressively weaker. They may not be; it may be only because, with all mt sit-to-stands and walking (nothing like your daily 2-3 miles!), I asking more of my legs. I’m not sure. I sometimes think of my PN as a threefold punch to the gut: poor balance, a wobbly way of walking, and ever-weaking legs (all contributing to each other). There’s only so much I can do to improve my balance or steady my wobbly way of walking; I would like to think, however, that I CAN to something about strengthening my legs. I find myself focusing more and more these days on just that: strengthening my legs.*

*An awful thought: Might another one of PN’s cruel thefts––along with the theft of our internal gyroscope that helps up stand steady and walk straight––be the theft of our leg muscles birthright capacity to improve with exercise? Is that gone, too? That’d be a tough one to live with.

The results from my genetic test are inconclusive. I was impressed, though: well over a hundred genes had been looked at. Only one gene of all those genes was determined to be a “variant.” My printed report reads, “We interpret this variant as a variant of uncertain significance.” The NP said, folding and handing the report to me, “Dr. Wolff and I agree, there’s not much we can do with the results of your genetic test.”

And there endeth today’s sermon. 🙂

Cheers!
Ray