How can a person be diagnosed with Neuropathy if they are not Diabetic

Posted by Dino Soke @dinosoke, 5 days ago

I was told that I have Neuropathy in my right ankle and server infection in my left ankle. Now I am understanding that a person must be a diabetic in order to be diagnosed with Neuropathy. Is any of that true?

Interested in more discussions like this? Go to the Neuropathy Support Group.

have idiopathic PN. They did plenty of tests, I believe the gold standard is the Nerve Conduction Study/EMG. It reveals a lot to the neurologists. I have it in my feet and some numbness in my fingers. I also cannot feel temperature in some of my fingers and have to be careful to watch for burns.

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Profile picture for laura1970 @laura1970

@bajjerfan if you’ve had an adrenalectomy, I think you’re doing great and obviously know how to take care of yourself. Keep up the good work!

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@laura1970
Initially in 2021 they wanted to remove the right adrenal gland as it had the larger cortisol producing growth on it. I declined it in favor of research participation. About a year and a half ago the growth on my left kidney increased in size to the point it needed to be removed as it was also cancerous. So at the same time I had them remove an adrenal gland. They took the left one out of convenience.

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Profile picture for gcapling @gcapling

Wishing to find more info on MMP13 inhibitors.

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@gcapling some people develop neuropathy from certain chemotherapy medications.

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Profile picture for John, Volunteer Mentor @johnbishop

@bajjerfan I've always thought that my pre-diabetic condition was related to my neuropathy also and none of my doctors over the years even mentioned the possibility of neuropathy. It wasn't until I learned about the metabolic syndrome which pretty includes all of us categorized as having pre-diabetes. Here are a couple of research papers with more information. I wished my doctors would have mentioned it when they first started warning me about diabetes. I just didn't want to believe pre-diabetic was a warning sign.

-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

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@johnbishop Really interesting links and make a lot of sense in terms of searching for that illusive cause. A good reminder to me to watch my diet and exercise which help with all the things they mentioned as contributors. Thank you!

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Profile picture for debbieod @debbieod

I do not have diabetes. I do have neuropathy. I do have balance issues but not quite like yours. It is hard adjusting your life to the seriousness of this awful malady.
I believe mine started with taking several rounds of Cipro and round od leviquine
I do not have the same symptoms as you. You might try posting again and asking the question about your balance in the question. Also if you search in this forum I believe you will find others that describe the same symptoms you have.
Read read read. You might find something that helps and some encouragement. This is a good forum.

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@debbieod
I have the same, no diabetes but neuropathy that started @5 yrs. ago. I have been going to pt since, although my pt closed so I’m trying to do it on my own. In the beginning I was able to walk on my own but a couple of yrs in needed a cane. I am now dependent on a walker. This year my balance went making everything different. It has gotten bad. I have given up driving, hardly being able to walk very far which just started this week. Last night I fell AGAIN just walking to the bathroom. I hardly slept thinking everything I have given up and worried for the future. My son and his wife have the cutest 2 yr old ever, something I’ve waited very long for. Very saddened now that it’s here I can hardly do anything with him. This past week has been a challenge to keep my spirits up. Trying hard to work harder and improve but I’m finding my left foot is turning in and that leg is hard to function. I have much to be thankful for and need to get my head straight…just scared for what’s ahead.

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Profile picture for John, Volunteer Mentor @johnbishop

Dino @dinosoke, There are many causes for neuropathy and even one when they can't pinpoint the exact cause of your neuropathy like mine - idiopathic small fiber PN. Here's more information from Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061.

The Foundation for Peripheral Neuropathy also has a list of known causes and more if you care to learn more about neuropathy - https://www.foundationforpn.org/causes/.

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@johnbishop the Mayo clinic is still saying vitamin B6 is safe (August 2025 update) despite mounting evidence to the contrary. It causes peripheral neuropathy. Is not recommended above 10mg per day (only with medical diagnosis of deficiency) and is being taken off the shelves in Australia by 2027. I have no idea why it’s not banned now. Let the suppliers clear their stock and poison more people? Mayo still give it the green light despite the epidemic of peripheral neuropathy caused by taking it. I was really surprised.

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Profile picture for lorry @lorry

@johnbishop the Mayo clinic is still saying vitamin B6 is safe (August 2025 update) despite mounting evidence to the contrary. It causes peripheral neuropathy. Is not recommended above 10mg per day (only with medical diagnosis of deficiency) and is being taken off the shelves in Australia by 2027. I have no idea why it’s not banned now. Let the suppliers clear their stock and poison more people? Mayo still give it the green light despite the epidemic of peripheral neuropathy caused by taking it. I was really surprised.

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@lorry I haven’t seen any recommendations to take B6 unless you have a deficiency. I always discuss supplements with my doctor before taking them. Do you have a link to the Mayo resource where you read B6 is recommended?

I do think that you shouldn’t take B6 if you already have neuropathy unless you have a deficiency.

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Back in 2021 when I was first diagnosed with hypercortisolism I also had issues with spinal stenosis and lower back pain. Unfortunately the 2 coincided with the result that I didn't know what was causing what. I ended up with right foot drop because of the nerve damage. By sometime in October I was having difficulty walking and gave up driving. By Christmastime I was finally able to get the lumbar surgery stuff out of the way. Seems like it was nearly 3 months till I could walk or drive again. I was decent for maybe a year and then it got increasingly difficult to do any adequate amount of walking. I still have lower back pain [more than one issue IMO] that may or may not be related to the original stenosis. I can do my exercise bike to help keep my lower legs useable. Not being able to walk well makes it difficult to get the exercise that everyone says that you need to get. Frankly, I don't look forward to the amount of walking that one needs to do during their visits to Mayo Clinic

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Profile picture for John, Volunteer Mentor @johnbishop

@lorry I haven’t seen any recommendations to take B6 unless you have a deficiency. I always discuss supplements with my doctor before taking them. Do you have a link to the Mayo resource where you read B6 is recommended?

I do think that you shouldn’t take B6 if you already have neuropathy unless you have a deficiency.

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@johnbishop I started a thread about this almost a year ago when I was diagnosed with B6 toxicity (taking 25mg in a magnesium supplement). I had my 12 month blood test a few weeks ago and the woman who took my blood noticed the ‘history of B6 toxicity’ on the form. She exclaimed “you too?!” And went on to explain that after many years of collecting blood for testing, in the past year she had seen what could only be described as an epidemic. Once the problem started to appear on news programs, people got tested and an alarming number had very high readings.
Because toxicity symptoms mimic deficiency symptoms, some people were even being prescribed supplements.
With new laws coming in here, I thought I’d google and see if other countries were doing the same thing.
I was astonished to see a Mayo clinic update August 2025 with ‘safe’ and a green light!
http://www.mayoclinic.org/drugs-supplements-vitamin-b6/art-20363468

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Profile picture for lorry @lorry

@johnbishop I started a thread about this almost a year ago when I was diagnosed with B6 toxicity (taking 25mg in a magnesium supplement). I had my 12 month blood test a few weeks ago and the woman who took my blood noticed the ‘history of B6 toxicity’ on the form. She exclaimed “you too?!” And went on to explain that after many years of collecting blood for testing, in the past year she had seen what could only be described as an epidemic. Once the problem started to appear on news programs, people got tested and an alarming number had very high readings.
Because toxicity symptoms mimic deficiency symptoms, some people were even being prescribed supplements.
With new laws coming in here, I thought I’d google and see if other countries were doing the same thing.
I was astonished to see a Mayo clinic update August 2025 with ‘safe’ and a green light!
http://www.mayoclinic.org/drugs-supplements-vitamin-b6/art-20363468

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@lorry I actually don't see a problem with the article although I'm not sure I would have used the "Green light" image next to topic "Generally Safe". It does go on to explain the conditions it's safe for taking and then specifies the safety, side effects and interactions below that along with a note saying to check with your doctor for supplements, etc. I do find it a little misleading if you have neuropathy because it's a no no to take unless you specifically have a deficiency. I had that discussion with one of my Mayo doctors early in my diagnosis of neuropathy. That's also when I stopped drinking any of those sports drinks that are loaded with B6.

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