Living with Neuropathy - Welcome to the group

Good morning, chawk (@chawk)

We have a lot in common. I was diagnosed with idiopathic neuropathy in 2022. To give it its full name: idiopathic large-fiber sensory-dominant polyneuropathy (a mouthful!). I also had a case of foot drop, but that was many years ago, years before the arrival of my neuropathy (as best I can tell).

What we’ve also got in common – what really made me zoom in on your post – is a history of long-stance running. I moved from LA to Denver expressly to run in my first-ever marathon: the then-called United Back of Denver Mile-High Marathon. (I finished, but oh, boy, please don’t ask how I did. 🙂 )

That was about the time I became a running junkie, not able to pass up a single citizens’ race, no matter the length, the whereabouts (as long as I could afford to get there), how I was feeling, or what else might be going on in my second-place social life (sad, I know). It wasn’t until the late ‘90s when my ortho doc slapped an X-ray of my right knee up on his lightbox and spoke those words we runners dread to hear: “Bone-on-bone.” A subsequent knee replacement brought my running life to an end.

Cutting to the chase: a good pair of shoes for us neuropathists? (Neuropathists? Is that a real word?) I’ve been searching for that “good” pair of shoes ever since I got outfitted with a titanium knee, but I never had much luck. (My current pair: Brooks Addictions, fitted with a pair of $$$$ orthotics; they’re “good,” but … ) (I loved your “ … but cover as much distance side to side as I do going forward.”)

That’s enough blah blah from me. I just wanted to say hi: one inebriated Popeye to another!

Cheers!
Ray (@ray666)

P.S. You have the medals; I have bureau drawers packed with racing events tee-shirts, so many that many boast of races I don’t remember running. 🙂

Hi Mike @domiha, My PMR was diagnosed by a Mayo Rochester rheumatologist. My primary care doctor gave me a referral. I had a swollen knee and right ankle which was diagnosed as gout along with the PMR. I had extreme pain in my shoulder joints, arms, hips and legs and could barely walk due to my own ignorance of waiting until the symptoms got really bad before going to the doctor and my wife pushed me in a wheelchair to my appointment. I saw several doctors during my rheumatology appointment. The first appointment drained some fluid from my under my kneecap and gave me a steroid shot in the knee. Then I met with the rheumy who gave me a physical exam and went over all of my symptoms before diagnosing me with PMR. I had also had blood labs drawn before the appointment which added in the diagnosis. I finished the morning appointments just before lunch and the doctor had me pick up a prednisone prescription from the pharmacy and take 20 mg right away. By the time my afternoon appointment with him around 2:30pm came around I was feeling pretty good and able to walk by myself again. It took me 3-1/2 years to taper off of the prednisone for my first time with PMR.

A few years ago I had some really bad pain in my right hip and got a referral to Mayo Ortho at Rochester. They gave me a guided steroid shot in the hip which relieved the pain and also signed me up for some PT which was pretty helpful once the pain was gone. I still do the exercises but haven't been as faithful doing them as I should. If it's your hips only, if it were me and they feel much better after I'm up and walking around, I would see if you can get some PT that would help with the hip. You can also try some yourself to see if they make a difference for you. My favorite PT guys - Bob & Brad have hip pain relief program that you can print out the exercises and watch videos that explain the problem and the exercises to help - https://www.bobandbrad.com/health-programs/hip-pain-relief-program.

Hi John--Thanks for the quick reply! I never thought I'd be searching for the perfect shoe like surfers go after the perfect wave, but here we are!
Right now, I've got a couple pair of Altras that I wear with bamboo inserts. They fit my wide feet pretty well but I'm not getting the feel I'd hoped for--i.e., the carefree, pre-neuropathy feel of lacing up and not thinking about it. I might have set the bar a little too high but I'm still looking. I've seen the Cadense website but I'm not sold. We persevere! Thanks again...

Thanks, John @johnbishop . I have watched Bob & Brad and they are great. I hate that Bob is in failing health and unable to participate any longer in the actual videos. I will check their youtube and see if I find something for the hip. I see my chiropractor on Thursday of this week and will ask him about the hip, as well. And I see my PCP later this month and will ask him about referring me for some PT. I did PT for about a year after my surgery.... but since then I have also not been as dedicated as I should be to continuing exercises. What I have may likely not be PRM at all.... but just stiffness in the joints from lack of use. I had just never heard of the PRM. I also started sleeping with a pillow between my knees and I've noticed that helps a bit.
Thanks again! Best wishes! Mike

Hi Ray--Good to hear from you!

I really got a kick out of learning that you moved from LA to Denver to do the Mile High Marathon. As it happens, I moved from Denver to LA a couple of years after my wife, a veteran of the Mile High, got me into running! In Denver, I wrote for the late, great Rocky Mountain News and left it for a job at the LA Times. We've lived in Ventura since 1988.

Bummer about your knee! But not being able to run makes walking all the more important, and neuropathy transforms a good pair of sneakers into the Holy Grail.
I'm on Altras right now but they don't feel quite right. Of course, it may be that my feet won't feel quite right in any shoe--just because they don't feel quite right anywhere.

I don't know if my neuropathy has its roots in running but I remember the warning my Denver podiatrist, Eddie Raczka, issued to all his running patients: "In 30 years, you guys will have great, healthy hearts--but your feet? Forget it!"

In the non-shoe area, are you doing any supplements that have helped? A friend gave me some alpha-lipoic acid pills (dude--I scored some acid!) and I just upped my dosage from 600 mg to 1200 mg. Some folks report good results. Thankfully, there's always something new to try!

Take it easy,

Steve

Hello again, Steve (@chawk)

The parallelism goes on, if occasionally in reverse. I was Bronx born and bred, but after a stint in the Army, I quit my job as a junior reporter with the Bergen Co. Record in Hackensack, NJ, and relocated to Colorado (a decision the worth of which I still question). The year was– and now I'm about to reveal myself as an Old Codger –1970. I'd given up thoughts of journalism and had decided instead to pursue advanced degrees in theatre. Sad to say, I profited not a penny from my advanced degrees; however, I did have a ball acting on Denver's seemingly countless blackbox stages. Them thar were the ol' good days!

And thanks to a decent share of generous reviews, I, too, still remember her as the "late, great Rocky Mountain News."

If my mind's not getting foggy, watching Frank Shorter win the gold in the '72 Olympic got me hooked on running – along with 20 gazillion others worldwide. As I recall, my first "good" shoes were Asics. I had them with me when I moved to LA. I ran many a happy mile in, up, and around Griffith Park in those Asics. The smog got to me after a while. I'd already made plans to return to Colorado when I saw the Runner's World advertisement for the coming spring's United Bank Marathon. I now had a date to train towards! Let me lace up my Asics …

My podiatrist, John McGarry, is an ultra-marathoner. He's regularly run Leadville's 100-mile ultra-marathon. When he told me about running a 100-mile marathon, I decided not to try to impress him with tales of my recent Sloan's Lake 10K.

I've used a number of supplements on and off over the years, none with any reportable success. The only supplement I've stuck with – because both my neuropathist and my 100-miler podiatrist are enthusiasts – is a medical food called EB-N5. You'll find quite a few mentions of EB-N5 on Connect, many of those mentions made by me.

A short training run in the a.m.? I'll meet you in front of the City & County Building.

Cheers!
Ray (@ray666)

Sent a return message to you. Lost it.. I think it was correctly sent.. Can you help me find it? Thanks..

Is this the post that you were looking for? - https://connect.mayoclinic.org/comment/1149568/

If you go to your profile by clicking on the profile icon at the top right of any Connect page, you can see all of your posts starting with the most recent.

It sounds like we are twins as it happens to me & in my apartment I do scream & feel like kicking the wall or something to stop it. Wish there was something to stop it. It mostly starts when I am sitting or relaxing or in bed too. Good luck to both of us & maybe they will find some way to stop it.

Steve,

I wish I’d kept my last reply to the medical and not so much the personal, but I got so charged when I heard you and I had several overlaps – Denver and LA, the newspaper business, and running – that I lost control. So, I’ll try to keep this post to the medical. You had asked about supplements …

… and I mentioned briefly and only in closing that I’ve been using a prescription-only supplement called EB-N5. First, though, to backtrack: I have idiopathic large-fiber, sensory-dominant polyneuropathy. For me, that means lots of balance problems (worse on some days and at certain hours of even my “good” days), but no pain (for which I’ll be forever grateful). My neuropathy was diagnosed via my first EMG in August 2022, although, as I reflect back, I’d been having worsening balance problems going back possibly as much as ten years. Once I received my diagnosis, I began auditioning specialists (as so many of us with neuropathy do) until I met a fellow I really liked; I’ll call him “Dr. B.”

Dr. B, besides being a neurologist, was also a physiatrist whose focus was physical rehabilitation: less emphasis on drugs and more on physical therapy. I liked that, as that was what I was looking for at the time: a doctor who’d take more of a holistic approach and was less interested in giving me yet two or three more prescription-only medications. Several months into working with Dr. B, he surprised me by asking if I’d like to try a “medicinal food,” EB-N5. Having accepted that my neuropathy was incurable, my attitude was, “What the hell? Why not?”

I started taking EB-N5 in July 2023: two hefty capsules in the a.m., and two more hefty capsules in the p.m. I mentioned EB-N5 here at the Connect forum, and discovered right away that – at least in many people’s minds – supplements like EB-N5 were “controversial,” because they contain a substantial measure of Vitamin B6. It’s known (so my reading has shown me) that B6 in excess can either bring on neuropathy-like symptoms or exacerbate existing symptoms.

This alarmed me, and so I talked with Dr. B. It was Dr. B who explained (and was seconded by others here at Connect) that B6 comes in two distinct varieties: B6 pyridoxine hydrochloride, which, in excess, can have a toxic effect (the B6 found in most OTC supplements), and B6 pyridoxal phosphate, or P-5-P, which has not been shown to have a toxic effect.

So, I’ve been using EB-N5 for more than 15 months. I’m asked: Has it helped? To which I answer: I can’t be sure. I don’t think it’s hurt me. But helped? The only evidence I have is that EB-N5 may have helped in a second EMG, administered by Dr. B, a year after that first EMG, that showed my neuropathy had not progressed. I plan to continue with EB-N5 until I have more definitive information (helping or hurting) or until Dr. B says to stop.

Phew! I got kinda long-winded. I’d better stop. At least, however, I kept this medical. That was my plan.

Have a great day, Steve. I promise the next time I write, I’ll keep it to under a usable 500 words.

Ray