[mskari85]

Hi all - seeking some advice about what is happening to me. About 2 weeks ago I lost feeling in both of my feet. It was quite sudden and random. It started with my toes going numb and now my feet burn, tingle, feel like they're freezing, and they itch. It goes up my leg, too. I should also mention that I live in Minnesota and we had temperatures in the negatives when this all started.

So, of course, my first idea is to google about it and I read that the biggest cause for this is nerve damage caused by diabetes. I'm not diabetic, but I am overweight and not the healthiest person on Earth, so a few days ago I went to my doctor and had a full blood panel done. It confirmed that I am indeed NOT diabetic (A1C of 5.6% and a blood glucose of 88, which was after eating breakfast 2 hours earlier) But my hemoglobin is really low (9.5) and my white blood cell count is high. My vitamin B12 was totally normal. So now I'm really confused. She prescribed me an iron supplement for my anemia, but nothing I'm reading about PN suggests that anemia is a cause.

I'm having an EMG on both of my feet on Tuesday, so we'll see what comes from that, but I really don't understand why my feet are numb when I'm not diabetic and I don't have a B12 deficiency. My only problems being the anemia, my blood pressure is high, and I am overweight (which I am working on, I lost 80 pounds last year and hope to lose more this year, too!)

I'd appreciate any ideas or suggestions. I can't really figure out why this is happening to me. My doctor thinks it could be tarsal tunnel syndrome but I don't know how that would affect both feet at the exact same time.

Thank you! I'm so desperate. My feet are driving me insane!

[mrsD]

What are your B12 numerical results? "Normal" means nothing... since labs report low levels as "normal".
You should be at least at 400pg/ml.

There are drugs that cause PN... most commonly statins, and some antibiotics.

There are some blood peptides that build up in some people, and they clog the circulation affecting the nerves. One is MGUS and another is cryoglobulins.

Low thyroid functions can cause PN.

There are many triggers... and about 100 causes of PN.

[mskari85]

Originally Posted by mrsD

What are your B12 numerical results? "Normal" means nothing... since labs report low levels as "normal".
You should be at least at 400pg/ml.

There are drugs that cause PN... most commonly statins, and some antibiotics.

There are some blood peptides that build up in some people, and they clog the circulation affecting the nerves. One is MGUS and another is cryoglobulins.

Low thyroid functions can cause PN.

There are many triggers... and about 100 causes of PN.

Thank you for your reply! I actually don't know the specific number for the B12, she just told me over the phone it was normal. The results are being mailed to me, so I will have specific numbers soon enough.

I should mention that I have been taking an under the tongue supplement for B12 for over a week now after reading about how a B12 deficiency could cause PN. (Sort of self-medicated myself before seeing the doctor - bad, I know) But now perhaps the blood test results aren't showing a lack of B12 because of the 2500mg that I've been taking daily? Does it work that quickly?

I do take Nexium for heartburn and I've been taking it for 2 years. Apparently heartburn medication can cause a B12 deficiency, but again, I supposedly do not have one. That's the only medication I take.

[zkrp01]

Originally Posted by mskari85

Thank you for your reply! I actually don't know the specific number for the B12, she just told me over the phone it was normal. The results are being mailed to me, so I will have specific numbers soon enough.

I should mention that I have been taking an under the tongue supplement for B12 for over a week now after reading about how a B12 deficiency could cause PN. (Sort of self-medicated myself before seeing the doctor - bad, I know) But now perhaps the blood test results aren't showing a lack of B12 because of the 2500mg that I've been taking daily? Does it work that quickly?

I do take Nexium for heartburn and I've been taking it for 2 years. Apparently heartburn medication can cause a B12 deficiency, but again, I supposedly do not have one. That's the only medication I take.

You need to stop supplementation about 7 days before your bloodwork. The actual number may have been elevated by your supplement. Your number after "stopping" for a week should be 400 at least. And as Mrs.D said, there are many causes and some unknown. Diabetes is common but also toxins, trauma. chemotherapy,etc. Good Luck, Ken in Texas. P.S. some antibiotics also.

[mrsD]

If you were already using the B12 when the test was taken, the results will be artificially high. You need to stop all B12 about a week before any testing, to get a more reasonable result.

If you use the B12 under the tongue, do so on an empty stomach.
Most is dissolved in the saliva and swallowed, so it needs to be on an empty stomach to get best absorption, in the small intestine.

Methylcobalamin is the best form to use, and many people have a DNA mutation in methylation (MTHFR), and cannot activate cyanocobalamin form.

And yes, the Nexium could be a problem, including the following other nutrients:
Folate
calcium
magnesium
iron
zinc
B12
and possibly other trace minerals like copper, chromium, etc.

[mskari85]

Thanks again for the replies! It makes sense that the supplement would affect the test results. I shouldn't have taken it yet, but I was desperately trying to rid myself of this annoyance. I'm relieved it isn't related to diabetes because maybe this wont be permanent.

My thyroid was checked and it is normal. I have not had any surgeries or taken any antibiotics in a few years. The only trauma I could think of would be my poor posture and the way I sit at my desk. I've sat this way for years. I'm 6 feet tall, so I always lean forward and cram my toes into the floor. Could this repetitive action be the culprit? I haven't done it since my feet went numb. I actually haven't even sat at my desk since my feet went numb because I can't stand the feeling of my feet sitting flat on the floor, tingling away. I spend most of my time now either walking around or on the couch with my feet elevated.

This is truly the most annoying thing ever and I hope to get to the bottom of it. Thank you for all the information so far!!

[Healthgirl]

I also am anemic and it is not treatable through iron supplementation. I found out that my copper is deficient as well and that in order to absorb iron, one must be able to absorb copper. I still cannot absorb and have been diagnosed with pn all over. I was very fit and healthy. They don't know what happened.

It might be worth asking your doctor to check your copper and ceruloplasm. If you google those, you will see that copper deficiency can cause neurological problems. This happens from people who have had gastric bypass or celiac (due to malabsorption).
Heartburn drugs do interfere with absorption because they turn down stomach acid which is needed for breakdown and absorption of micronutrients. Hopefully it's something simple for you. Wishing you luck.

[mskari85]

Originally Posted by Healthgirl

I also am anemic and it is not treatable through iron supplementation. I found out that my copper is deficient as well and that in order to absorb iron, one must be able to absorb copper. I still cannot absorb and have been diagnosed with pn all over. I was very fit and healthy. They don't know what happened.

It might be worth asking your doctor to check your copper and ceruloplasm. If you google those, you will see that copper deficiency can cause neurological problems. This happens from people who have had gastric bypass or celiac (due to malabsorption).
Heartburn drugs do interfere with absorption because they turn down stomach acid which is needed for breakdown and absorption of micronutrients. Hopefully it's something simple for you. Wishing you luck.

Oh wow. Thank you for responding. I am so sorry to hear that you are unable to absorb and that you have PN all over as a result. Is there really no possible treatment? This is all very new to me, but I have a feeling I will be an expert at the subject in no time. It's so crazy how life works. One day my feet are normal and the next day I can't feel them. It's all I can think about lately. It surely makes all the petty things that I thought were important before seem ridiculous now.

[mrsD]

Originally Posted by mskari85

Thanks again for the replies! It makes sense that the supplement would affect the test results. I shouldn't have taken it yet, but I was desperately trying to rid myself of this annoyance. I'm relieved it isn't related to diabetes because maybe this wont be permanent.

My thyroid was checked and it is normal. I have not had any surgeries or taken any antibiotics in a few years. The only trauma I could think of would be my poor posture and the way I sit at my desk. I've sat this way for years. I'm 6 feet tall, so I always lean forward and cram my toes into the floor. Could this repetitive action be the culprit? I haven't done it since my feet went numb. I actually haven't even sat at my desk since my feet went numb because I can't stand the feeling of my feet sitting flat on the floor, tingling away. I spend most of my time now either walking around or on the couch with my feet elevated.

This is truly the most annoying thing ever and I hope to get to the bottom of it. Thank you for all the information so far!!

Yes, it might be useful for you to see a good podiatrist and explain your foot problem and how you sit. Your issues with your feet may be mechanical in nature and correctable with support inserts or another treatment. (compression).

This is a really helpful website to illustrate all sorts of foot issues:

http://www.northcoastfootcare.com/

Even lacing your shoes in a different way can help compressive nerve damage in the instep.

[JimD]

I was just going to write a post looking for some supplement help when I read yours and it is almost exactly my same story except that I am 4 months in. It started out of nowhere back in September. I woke up one morning and felt my toes slightly numb and frozen feeling and tingling from my feet to my knees. Prior to this I felt no symptoms and had been a completely healthy and very active person. I tried to ignore it for a few days thinking it would go away but it never did. Went to my doctor and she had some bloodwork done all of which was normal. The feeling persisted for another 2 weeks with burning feeling whenever I had shoes on. I was freaking out thinking I had MS, being that a cousin of mine does. I went to see my first neurologist and his initial exam and spine MRI’s did not reveal anything. He said to wait another week to see if it would go away and if not he would send me for an EMG/NCS test. After that test was normal, he pretty much gave up on me so I went to another neurologist who has been great so far. She sent me for extensive blood work checking for everything.

One of the three abnormal results was low vitamin D, but it was 29 ng/ml and the standard range is supposedly 30 – 100 ng/ml. The second was my Vitamin B6 level which was really high at 127.2 ng/ml when the standard range is 2.1 -21.7 ng/ml. This may have been skewed because about a month before, I started taking B-Complex with 100mg of B6 in it thinking it would help my condition and I only stopped it two days before the test. I had only been taking a multi-vitamin with 3mg of B6 in it before all of this started. Once I learned that B6 Toxicity can cause PN, I stopped the B-complex and the multi-vitamin. I will get my B6 levels checked in the next few weeks to see if it came down. The third was a slightly high number on the 2 hour glucose tolerance test which could indicate prediabetes. I have since curtailed sugar, started eating healthier and upped the exercise.

My Neurologist sent me for a QSART test and I will find the results next Thursday at my appointment. I have been taking Gabapentin since November and am currently up to 1200 mg a day. I don’t know whether it is working or not because I still have my symptoms. Hopefully I can find the cause and hopefully start healing. This is definitely has had a huge affect on my life and it is driving me crazy.

I also take:
5000 IU Vitamin D3 (Once a day)
2000 Micrograms Methyl B-12 (Once a day)
1000 mg Acetyl L-Carnitine (HCI) with
600 mg Alpha Lipoic Acid (Once a day)

I am going to start fish oil but I need some help with what dosage and brand. Should I also be taking magnesium? Anything else I should be taking? I will take whatever I can if it helps.

This site has been a tremendous help so far.