Diabetic neuropathy - a little unusual

Hello all. Let me tell you about myself, for all who may be interested. When I noticed a balance problem a couple of years or so ago, I was diagnosed with diabetic peripheral neuropathy. I've been type 1 diabetic for over 30 years. However, I seem to be different from the run of the mill peripheral neuropathy. I can still feel my feet, though my brain doesn't know quite where they are. I have no pain, so very lucky there. Where I seem to be unlucky is that after sort of plateau-ing for a year or so, for the last few weeks or months my condition has gone steadily downhill and while 6 months ago I could walk fine with a stick (once I got going) I now struggle to get very far on two sticks, usually use a wheeled walker, though not for more than a few hundred yards, and am looking into wheelchairs. I've noticed clear deteriorations every week or so for quite some time. No-one seems to have come across any similar case. I'm waiting to see a neurologist again, having been discharged after diagnosis and referral for physiotherapy. My diabetic control has been pretty good, so can't specifically blame that. Anyone any experience of anything similar?

14 Replies

  • Could it Be B12 ? Your level needs to be around 1000 - so ask for the test and obtain a copy of your results. GP's like to say normal - when they mean in range. It is where you are in the range that counts. B12 deficiency is a neurological condition.

  • Thanks, Marz. I take your point. It has been checked, but I didn't ask for the specific figure. I'll do that.

  • B12 under 500 can present with neurological symptoms. Interestingly in Japan the range STARTS at 500. Also there is more brain shrinkage when B12 is low. Alzheimers anyone ?

    Docs not trained to treat vitamin deficiencies - there is more money to be made by giving drugs for the many symptoms.

    You are legally entitled to all your blood test results so you can monitor your OWN health.

    I recently read that diabetics should also have their Thyroid checked - have you had yours done ? Its all the Endocrine system/disorder.

  • Yes, thyroid checked and OK. I don't have any problems with my GP. They're always quite happy to share and discuss if I ask.

  • thyroiduk.org.uk/tuk/testin...

    When you obtain copies of your Thyroid tests from your GP you can check them against the above link . What was actually tested ? Was it the full Profile as the TSH is a Pituitary hormone and does not give the full story.

    Diabetes is auto-immune - as is Hashimotos - Thyroiditis - so important to know exactly what the thyroid is producing - FT4 - and is it converting into the ACTIVE thyroid hormone FT3 ? Docs rarely test anything more than the TSH which tells you VERY little.

    Click onto my name at the top of this post and read my Profile and my health journey :-) I am not a Medic - but someone with Hashimotos - Crohns and a B12 issue .....

  • @dozeyjohn: The OFFICIAL B12 deficiency level in the U.S. is set at 200. It is 500 or even 550 in many other countries. I don't know about private insurances, but Medicare won't pay for the shots if one's level is even slightly above 200. My level was 225. My doctor did not even want to order the shots because he said 225 was "normal". I had to prove to him that it is higher everywhere else in the world, and he finally ordered it, but I had to pay for it myself. As for the neuropathy, not all neuropathies are caused by diabetes. Was your neurologist a specialist in neuropathies? Or was it "just any old neurologist"? I have had a slowly progressing neuropathy for about 30 years. I have had very well controlled type II diabetes for only 12 years. For some of that time it was so "well controlled" (due to cancer) that I was taken off the meds for it altogether for a few years. Nevertheless, since that "DM II" diagnosis is now on my chart, they dismiss the neuropathy as being CAUSED by the diabetes. I plan to seek a neurologist (it will be my third attempt) who actually KNOWS something about neuropathies, and see if I can get clarification. I will most likely have to travel hundreds of miles to a teaching medical center somewhere. Look into things like CIDP, and of course, the B12 issue.

  • Thanks Judmilla. I'm in the UK. I did go private at first, but wasn't very impressed. Now relying on the NHS which is doing a good job so far. Seeing a new neurologist shortly, with the possibility of being referred to a neuropathy specialist a few miles further away. I'll make sure it happens and will keep your comments in mind.

  • By the way, getting my B12 levels up to about 2,000 did not in any way affect the neuropathy. It did clear up two other unrelated things: Frequent ocular migraines and oral stomatitis. I was on the shots for one year and my levels went up to about 800, and the ocular migraines dropped from 5 or 6 a week to only about one every 6 months. Then I switched from the shots to the sublingual tablets, 2,500mcg (my husband hated giving me the shots), and my levels went up to over 2,000 and the migraines stopped completely. So I cut back to taking the tablets every other day. In 3 months, my levels dropped to 1,000 and I had an ocular migraine. So now I'm back to every day.

  • A good recommendation. Congratulations on your (limited) success. Have you looked into adding fresh turmeric into your diet as a means to controlling the neuropathy and diabetes?

  • My feet also went through a phase of having trouble finding the ground. I noticed a difference when I added coconut oil to my diet. The lauric acid in kefir can pass the blood brain barrier and has a positive effect on neural pathways. Having said that I also added probiotics to my diet, in the form of live kefir, at the same time. There is a very close relationship between the brain and the gut and an imbalance in one can send the other out of kilter.

    As far as the neuropathy and diabetes go there is a lot of evidence that the active ingredient in turmeric, curcumin, has a beneficial effect on both (though I'm not sure that it will 'cure' 30 years of type 1 it certainly might help control it) greenmedinfo.com/blog/turme... & ncbi.nlm.nih.gov/pmc/articl... This second article looks at diabetic neuropathy but the principle is the same. Turmeric, which is also a powerful painkiller, has been shown to have a positive effect on nerves and brain cells and can repair damage to both. Of the commonly available sources, fresh turmeric is the better option as it contains turmeric oil, which has many beneficial actions in its own right. If you prefer to try curcumin so that you are taking a set dose then you need to look for one that claims 95% or higher.

  • My diabetes is pretty well controlled, and has been all along. My A1C is 6. I'm working at getting it lower. I do use a lot of turmeric, but not the fresh, at least not very often. The nearest store that (occasionally) carries it is 50 miles away. If I do find it, it is a large bag of it, and it dries up and rots before I can finish it all. Between my husband and myself, we go through about a pint of the dry powder every few months. There is an Indo-Pac store the same 50 miles away, that ALWAYS has the powder, so I stock up on a bunch of 8-ounce bags every time I go there. I can't positively say that it helps anything, but I can't say it doesn't either. Who knows how much worse everything would be if I were not doing everything I can think of to make it better? Besides, we both love turmeric. My husband is allergic to coriander and I am allergic to chili pepper, , so we avoid commercial curry powder mixes and garam masala mixes, and we make our own mixtures.

  • All interesting comments. Many thanks. I'm making notes and will try whatever might help. My diabetic control is also pretty good, so it can't be lack of control which is making things worse. I'll look at everything that's been suggested.

  • Found this somewhere on Facebook. None of it is anything I've ever had a problem with, but I guess I will pass it along anyway. healthyfoodhouse.com/dont-e...

  • Ah! OK. So insulin, clopidogrel and omeprazol are contra-indicated - all of which I'm on. Thanks for the warning

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