Living with Neuropathy - Welcome to the group

Hi, @behthiemae

Welcome!

To what @johnbishop said ("Have you discussed your difficulty walking with your doctor to see if physical therapy might be helpful?"), may I add my endorsement? Mine is a similar neuropathy (some numbness, but no pain), diagnosed as idiopathic predominantly large fiber polyneuropathy.

The only prescription medication I have taken (over a year) is a medicinal food called EB-N5. EB-N5 is comprised of L-methylfolate calcium, Methyl cobalamin, Pyridoxal 5’-phosphate (Vitamin B6), Alpha-lipoic acid, and Cholecalciferol. Has EB-N5 helped me? I wish I could say. One bit of good news: a follow-up EMG a few months ago showed that my neuropathy had not progressed. Is that thanks to EB-N5? Again, I wish I could say. It does not appear to have done me any harm. That much I can say.

In my experience living with neuropathy, the key to not being overwhelmed with suggested medications and therapies is to read, read, read, and read only credible material. If you’ve not been there already, I’d recommend visiting the Foundation for Peripheral Neuropathy’s website (https://www.foundationforpn.org/); under Patient Resources > Past Webinars, you may view some of the FPN’s recorded webinars. I found them to be a great way to begin.

All the very best to you!
Ray (@ray666)

Hello again,@bethiemae

I had meant to say in my other post that physical therapy, especially balance work, is the one thing I'm SURE has helped me. I have been following an online balance program for more than a year. I would suggest you do the same or look for an in-person program near where you live, like Silver Sneakers. Unlike EB-N5, which I talked about in my earlier post without being able to say if a year's worth of taking it has helped, I'm positive that all of my balance work HAS helped.

Cheers!
(Ray (@ray666)

Thank you John and Ray!

Yes, I'm on l-methyl folate, 15 mg/day to be taken with food. I have not noticed any changes but I've been taking it a long time. Any changes would have occurred some time ago. It was recommended by my psychiatrist.

Hi, I'm Tom, and i did post a while back about my foot problem. Ice cold left foot --right affected too but much less so. I've since seen a neurologist who did MRI scans of brain and spine and a nerve conduction test. Brain normal and nerve conduction normal too. But my spine a mess, lots of degenerative issues. He did say this was normal for a 74 year old mind you..I've been very active in sports all my life and guess a hard running defensive midfield footballer hasn't helped; or the vigorous table tennis, et al.
He specialised in dementia so not ideal choice but said he thought I had a small fibre neuropathy. He suggested I visited a colleague who was more experienced. I did this ( and was charged £300 for 15 mins consultation..). It was not very scientific and all he did was use a device with a spinning ball to roll against my foot to determine if I felt it. I did on one but wasn't sure on the left one ( I do still feel things on my left foot, no numbness). He then said I had a " neuropathy" and confirmed this by letter. Not small fibre just neuropathy--maybe hedging his bets. I didn't challenge him. I know there is a skin biopsy test but this wasn't suggested( maybe not used in UK). That was that, no offer of treatment.
It is getting a little worse, and I am getting pain in my legs, but stretching helps a lot ( my wife was a lecturer in physiotherapy). My GP ( who clearly is not familiar with SFN) has suggested physio and I am waiting for that to start. Given I feel my problem is more likely caused by degenerative spinal issues or stenosis I welcome the physio. They say they can help with spinal issues.
Funnily, I have a lump on top of my left foot; perhaps a ganglion cyst. Again, waiting to get scanned. I could shorten the time by using my medical insurance but haven't as yet, and there is a 20 week wait otherwise. I wonder if this lump could be pressing on a nerve in my foot , explaining why my left foot is so much worse?? ( I'm good at theories, often wrong though, but not wanting to accept SFN diagnosis yet).
I'm still active, gym 3 times a week, cycling and league standard table tennis, and generally am ok. My foot gets a lot worse in the evening when sitting watching TV. It's also worse now when out walking, and switches from coldness to a burning feeling; but bearable. Leg pain goes away when walking.
Paradoxically, when I go to bed at night, within 2 minutes my feet return to feeling normal..and next morning are like toast. The £300 for 15 mins neurologist said it was to do with perception or something like that. I'm not sure he appreciated it went away even before I fell asleep !! Sorry , being a bit cynical here.
That's me up to date. I'd be interested in comments, especially if anyone else finds he or she gets relief when they go to bed.

I should have said my neuropathy is non-diabetic and idiopathic..

Hi Tom, I don't have the pain with my neuropathy, just numbness and some tingling in my legs and feet. I also have degenerative disc disease and some issues with leaning forward while walking which is similar to bent spine syndrome or camptocormia. I kind of suspect some of it's due to my age of 81 but my bride of 59+ years has told me I walked like an old man when I was in my late 40s. There may be something to your feeling that the neuropathy symptoms are due to spinal issues. I know when I wake up my symptoms are somewhat less in my legs and get a little worse as the day goes on so I also think part of it for me is due to the compression of the spine while I'm upright and maybe it's getting some relief laying flat at night.

You might find the following discussion interesting if not helpful, especially the first few posts with a video link and a few other links with good information by @jenniferhunter.
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

My name is Pat Evans and I am 83 years old and have had neuropathy for over 10 years. I’m on Lyrica 300 mg, gabapentin does not work for me any longer. I have been to Duke University for testing, had muscle testing, nerve testing, a MRI of my brain and every blood test you can think of, Diagnosis I have peripheral neuropathy and it is idiopathetic. I’ve never had chemo am not a diabetic, nor exposed to heavy metals. I’ve been to 4 different neurologists, 3 different foot doctors, an orthopedic doctor, all say the same, they don’t know why i have neropathy. I’ve had custom insoles made, bought every over the counter ones I can find, bought every brand of shoe I can think of and I can only wear Uggs slippers. Have gone from a size 9 1/2 to an 11 shoe because my feet want lots of room. I’m so discouraged at this point. Very difficult to walk because of the pain in my feet. Looking for any suggestions to something I may not of tried or even a Doctor I need to see, Thank you

Hi Pat,
I'm 61 and you can see what I wrote to @jerrymcg. I'm sorry to hear about your PN. And I hope that I can live as long as you are now. In addition to my PN, I have COPD and require O2 all the time.
You can see the meds I'm taking on Jerry's post but I don't know if that will be helpful to you.
Press on Pat! Please check in again from time to time! We PN's need to stick together.
I"m wondering what makes you most happy?
Take care!
Cheers,
Jill the Pill

Hi Pat @patevans, Welcome to Connect. I also have idiopathic small fiber PN but I don't need medications as I only have numbness and tingling but no pain that medications can't help. I also wear shoes with wide toe boxes. I went from wearing size 13 to 14 for the same reason as you but have recently switched back to a more stretchy shoe with wide toe boxes from Orthofeet. I know how you feel but please don't be discouraged, just learn as much as you can about your condition and what treatments are available that might provide some relief. In case you haven't already seen it, here's a good place to start.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Complementary and Alternative Treatments: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you tried any alternative or complementary treatments?