Suspected peripheral neuropathy

Brain and nerves
1

Hi all,

First-time poster here.

I’m a reasonably fit and healthy 54-year-old male. A few years ago (probably 3-4 years, though I’m not 100% certain) I began to notice an intermittent slight tingling/numbness/discomfort in and around the toes of both feet. I sort of ignored it, hoping it might go away. In short, it didn’t: although it’s varied in frequency and intensity, the overall trend has been a worsening one, to the point where it’s now something I experience most days if not every day.

It’s hard to describe the precise feeling: is it a numbness, a tingling, a coldness or a burning? In some ways it feels like all of these. It seems to occur more noticeably in the evenings, and particularly if I’ve been sitting with my feet elevated (e.g. on a recliner) – though it can also happen at other times of the day, and lately I seem to have noticed it more even if I haven’t had my feet elevated. It can be quite uncomfortable/borderline painful; frequently I have to curl my toes or press my feet against each other or against the chair or sofa I’m sitting on to ease it. Often by bedtime it’s bad enough that it makes it more difficult to get to sleep. It’s almost always gone by morning.

I’ve also noticed that the area around my toes can be hypersensitive, so that even a well-fitting pair of socks can begin to feel unbearably uncomfortable.

Anyway, after no doubt putting it off far too long, I finally went to see my GP about it a couple of weeks ago. He initially sent me off for blood tests to see if I had any vitamin deficiencies, calcium imbalances or signs of diabetes, all of which came back negative. I also asked to be tested for coeliac, since my daughter has it (though I have no digestive symptoms); that test takes a little longer so I’m still awaiting the results.

I should also mention that I drank heavily for a couple of years back in 2016-17 but have been abstinent since; given that, the GP thought it unlikely that alcohol would be a cause.

Having ruled out the most obvious causes, my GP has now referred me to my local hospital’s neurology department under the heading “query peripheral neuropathy“. Apparently i’m supposed to initially hear back from them by early November but the GP said it could be anything from 7 to 12 months before I actually see someone.

I guess I’m mainly posting just for information, support and encouragement. I am a bit worried, especially at the thought that no specific addressable cause might be found and I might be faced with a worsening long-term condition.

I’d be particularly interested to hear from anyone who’s been diagnosed with PN with an underlying cause of gluten sensitivity. I suspect my coeliac test is going to come back negative, but having done quite a bit of reading around this, I’m aware that one can have non-coeliac gluten sensitivity, and that PN can be one of the associated pathologies. While I don’t love the thought of having to go gluten-free, I’d gladly do so if I knew it would cure the pain in my toes.

Thanks in advance for any insight!

Rob (Warwickshire, UK)

2

We are talking semantics, but I believe the definition of peripheral neuropathy is based primarily on your symptoms; not the root cause. So if you are feeling tingling and sensitivity in your toes, it’s not an obvious circulation issue, and its severity varies with a circadian pattern, then it is neuropathy. What causes yours, we don’t know, but…. In fact, if you don’t know, then by definition it is ideopathic neuropathy; at least until you do know.

I find the mainstream health care system treats problems like these as low-priority, mostly because more often than not they simply cannot help much. Medicine just doesn’t know much about what causes it; much less how to reverse it. However, my own neuropathy has since subsided after I did a lot of work trying to research and manage it on my own. I did get told once that gluten was causing my problems, but for me, I don’t think the problem was so much gluten as it was spikes in carb intake (blood sugar is the leading known cause of neuropathy). Diet & exercise, and tight blood sugar control (whether you’re diabetic or not…) over >4 weeks is a large part of what I did.

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Thanks for taking the time to respond. Since becoming aware of PN and beginning to investigate potential causes and solutions, it’s become clear (notably through discussions on another online health forum) that many PN sufferers have had to take matters into their own hands and find their own solutions. I suppose I’d previously been thinking, somewhat naively, that all I had to do was wait for my neurology appointment and see where things lead from there.

As for my own situation, I feel a bit like I’ve fallen down several rabbit holes involving potential links with GERD, vitamin B12 deficiency, gluten sensitivity, etc. TBH it’s all a bit overwhelming and I’m not really sure how to begin making sense of it all and working out the best way forward.

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Would also be worth ruling out Guillame Barre syndrome, an autoimmune disorder where the immune system attacks the sheathing on nerves and Multiple Sclorosis. My sister has very painful feet from GB. She didn’t get a diagnosis right away. At first, it felt like her feet were asleep (pins & needles). My brother has Type II Diabetes with pins & needles in the feet. Best to reduce your sugar and refined carbohydrate (baked goods, crackers, pasta, pizza) consumption and eliminate juice/pop…these foods quickly release sugar increasing inflammation throughout the body and brain. My mother had PN as a result of a life threatening infection; she was also the sugar queen. One can develop pre-diabetes a decade before the onset of Type II. To determine whether or not insulin resistance/pre-diabetes is a factor, one needs to test fasting insulin and glucose insulin (to see whether insulin returns to normal 2 hrs after drinking pure glucose or stays high indicating insulin resistance). Many doctors test only A1C to determine Type II and don’t test for insulin resistance. Insulin resistance can be reversed through a low carb diet substantially reducing risk of all chronic disease.

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Thanks for the advice. Again, so many possible causes and avenues that it’s hard to know quite where to begin.

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Does sound like nerve pain. My sister uses Gabapentin for her GB. Seems to help. Hopefully you will get a diagnosis soon.

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