New member - 3 years with neuropathy, looking for support

I wanted to follow up and thank everyone again for all the incredible advice and support. Reading through all your experiences has been so helpful.

@lindabyrne38 - I've started walking more based on your suggestion! Just short distances around the neighborhood for now, but you're right that it does seem to help a bit. The diet changes you mentioned really got me thinking too.

@moorethrpy - Your point about vitamin B6 levels was interesting. It made me realize I should probably get my vitamin levels checked. My doctor mentioned that some vitamins and supplements might help with nerve health, so I've been doing some research on that lately.

@crissma - I'm so sorry about the chemo-induced neuropathy. It's frustrating when doctors don't take our symptoms seriously at first. Your positive attitude about exercise and diet is inspiring.

Since retiring, I've had more time to really dig into research about neuropathy treatments. I've been reading about various vitamins and natural supplements that might support nerve health. Has anyone here tried any specific vitamins or supplements that seemed to help? I'm particularly curious about B-complex vitamins, alpha-lipoic acid, and some of the newer nerve support formulas I've been reading about.

I know everyone's different, but I'm trying to be proactive about this since the gabapentin alone isn't cutting it anymore. My doctor is supportive of me exploring additional options alongside the medication.

Thanks again for being such a welcoming and knowledgeable community!

@mikes52 Well Mike, seems like many folks on the Connect have offered some excellent advice and as you can see, many on this forum have all forms of PN due to many causes. Unfortunately, most causes are never determined. Not sure if anyone made this suggestion but I would suggest that if you see a neurologist, try to see one that is very familiar with peripheral neuropathy and if possible, try to make an appointment at a teaching hospital. Good luck. Ed

Thank you all so much for the warm welcome and sharing your experiences! This is exactly what I was hoping to find.

@lindabyrne38 - Your story gives me a lot of hope! 8 years and mostly managed now - that's incredible. I've been pretty sedentary since retiring, so your point about walking really hits home. I used to be on my feet all day as an electrician, but now I spend too much time in my recliner. The diet changes you mentioned are interesting too. I'll admit my eating habits haven't been great since retirement. Did you notice the improvement gradually or was there a turning point?

@daisy22 - I feel for you! It's frustrating when you're not getting the help you need. Have you considered getting a second opinion? A podiatrist might be worth trying, especially for the foot-specific symptoms. My neurologist was the one who diagnosed me, but it took a few visits to get there.

@elainestewart48 - I'm on gabapentin too (300mg twice daily). Like you said, it helps but doesn't solve everything. The burning is still there, especially at night. Have you tried any other approaches alongside the medication?

It's so encouraging to connect with people who truly understand what this is like. Looking forward to learning more from this community!

I've seen a neurologist, orthopedist and had a nerve conduction study but the idiot who did the test didn't test at the left leg groin region where I had the anterior THA. Told me my nerve study was normal. All is normal!! I've tried the drugs but have such side effects that I won't take them. One mention of podiatrist. Does that really produce anything? Some write a podiatrist can't do anything but I feel I've tried everything else, why not a podiatrist, especially since my left ankle hurts as well. Now the numbness, tingling is going up into my calf from my foot and I get calf cramps. Any ideas?

I am going for an MRI of my feet in a couple of weeks on the basis of my podiatrist's exam of my feet. Although I put the bug in his ear. My foot pain didn't really start until about six months ago. I have developed all kinds of pain also. It can't hurt to have the pain checked out. One never knows.

Hi Mike...thanks for your comments. I take EB-N6, prescribed by my podiatrist. It is a B complex vitamin specifically prescribed for neuropathy. It is compounded by a pharmacy in Florida and they send to you. Really, a good podiatrist, is your friend. They know a lot about neuropathy because of their diabetic patients. If you take this, be careful not to take any other supplement with B. I also take Magnesium Glycinate for night time cramps. Gabapentin does nothing for this. I don't have pain but do have severe numbness in my legs, feet and vibrations...very uncomfortable. It is an unpredictable journey, this disease. My exercise, classes, walking is the most therapeutic thing I do.

Many people diagnosed with B deficiency are actually suffering B6 toxicity and are prescribed B vitamins that make the situation worse. B6 once considered safe to take up to 100mg a day is now limited to less than 10mg.
I was taking 25mg a day with magnesium for nocturnal leg cramps and when I developed PN symptoms I tested my B6 levels and instead of the usual 40mcg/L, I was at 1670! I am still detoxing and working through some nerve damage recovery but some will never recover. It was caused by Vit B6 toxicity. Anyone with PN should get their B6 checked. B6 is being taken off the shelves and by 2027 it will require a prescription in Australia. ‘Natural’ remedies are chemicals sold by an unregulated multi-billion dollar industry. Their recommendations are advertising not advice.