Hi there!

I just posted but for some reason it didn't post so I'll change the subject and have another try. I have type 2 Diabetes and have been a real couch potato when I should have been taking the walks I was supposed to. It started getting hard to zip my jeans up so I finally started taking long walks in the park.

I've had some past foot pain, toe numbing and burning on my right foot but once my A1C levels fell to 6.2 the symptoms for the most part stopped. That has lasted for about 3 years. Now after 2 months of walking 5 times a week and altering my food choices and portions my A1C fell to 5.2!

I lost enough weight to button my jeans waist button which is great but for the past 3 weeks both my feet and legs up to my knees have that nonstop burning-freezing sensation similar to the feeling of Bengay ointment plus electric shocks and toe aches and increased numbing. I changed my habits to healthier ones which was great for my glucose levels but disastrous for my neuropathy! I'm following my Doctors advice to the letter and look what happened. These ramped up neuropathy sensations are constant for the past few weeks and increase in the evening. I'm on sleeping pills now.

I did read somewhere here that someone started bike riding again and the burning sensation acted up too. I hope all this walking hasn't damaged the frail nerves to the point where this relentless burning is permanent. It is hard to know what to do. No one I've talked to so far has a clue.

Some people say the super restrictive "Paleo Diet" can help. I'll try most any reasonable sounding thing at this point. Reading others horrible problems here helps me put my misfortune into perspective and intensifies my urgency not to delay finding out everything I can with the hope of controlling the discomfort as best and as long as possible. Even thought about New Age Energy work which I've always been a skeptic of but you never know until you do. Hopefully others experience with alternative medicine will help guide my choices.

From what I have recently read I now have reasonable doubts my neuropathy is Diabetes related. There is a very significant possibility it could be Vitamin B12 deficiency due well documented B12 robbing medications I've been on for years. Sadly my Doctors are just not up to date with this common knowledge. It's right there in the National Institute of Heath website.

It's appalling how most American doctors are clueless when it comes to Vitamin B12 depletion which is very common. The entire subject of B12 amongst most American doctors is very out dated and potentially dangerous!

There are new tests that are far more reliable and minimum safe levels that have been used for years have been updated too. This updated information and testing procedures have been in effect all over Japan and Europe for several years. There are a small number of American doctors that are finally catching up. I watched some very informative lectures on youtube recently that brought me up to date.

Nobody wants to hear that the US is behind in anything but it's a fact and unfortunately it is not restricted to just this this area. As it turns out that in my case I cant extract enough B12 due to the medications I'm taking plus the fact that our current info on safe B12 levels are way too low and often very misleading and potentially life threatening. It's a huge scandal.

Being that I cant afford to fly to Europe or Japan I'm stuck here trying to tease out competent information with the help of others in the same boat.

Now that I know that the common "Serum B12 Test" typically used here is useless and have discovered the updated test called "Intracellular Vitamin B12 Analysis" and which health professionals in my area use their testing facility. Fortunately They are a huge company with lots of locations across the country and a list of hundreds of health professionals nationwide to recommend. I found that list yesterday.

Once I know what the true safe level range of B12 is I'll be able to receive the appropriate injection levels. Unfortunately injections are the only way for me. Sublingual Methyl B12 has no scientific evidence that it is absorbed into the tongue area making it no more effective than swallowing tablets. A lot of people believe the sublingual myth unfortunately and it could be costing them their health. So much misinformation floating about it's hard to navigate.

B12 has very low if any toxic levels for most people. I'm going to start B12 injections and adjust after the lab work is completed. I've read that many have gotten fast relief from a lot of tingling needle pricking and numb sensations from monthly injections. Worth a try and if all it does is slow down the degenerative process going forward it will be well worth it. At any rate it wont hurt you.

I'll keep you updated with the results. These are my opinions and Im not a qualified health professional or spokesman for any company but for what it's worth you are welcomed to research my findings for yourself and correct me as you feel inclined.

Hi Birdman, welcome.

Sounds like you've been doing some homework.

B12 injections are up to you, but I don't think they're necessary. The absorption problem for some is the MTHFR factor (you may have come across this) which prevents B12 from being absorbed/assimilated properly. Many folks here (self included) are taking 1000-5000 mcg of B12 (methylcobalamin)/day, which seems to be working fine to get our levels up there.

I wouldn't necessarily assume that your change in symptoms is due to changing your lifestyle for the better. It's entirely possible that this would have happened anyway—possibly even worse—there's just no way to tell for certain.

Are you taking any other supplements? When the burning started in my feet, I was given the typical scrip for gabapentin, which I tried briefly and at a significantly lower dose (100 mg/day was working for the few days I took it). Fortunately, around the same time, I found this site, and tried R-Lipoic acid (100 mg/day) and it stopped the burning completely within a very short time (it takes longer for most). I haven't needed/taken gabapentin since (the date is around my join date under my avatar). A while after, I began taking B5 (pantothenic acid) along with the R-Lipoic acid, and my symptoms improved even more (reducing the needle jabs & shocks).

Pantothenic Acid

Some here have also had good reults with B1 (Benfotiamine), Acetyl-L-Carnitine (ALC), and others.

I imagine you've found it by now, but there's a wealth of information in the Peripheral Neuropathy forum—so much that it will take a while to read/assimilate it all. I'm confident we'll see you there.

Doc

Welcome to NeuroTalk:

We have a B12 thread here:

http://neurotalk.psychcentral.com/thread85103.html

On it are discussions about every aspect of B12 supplementation.
I'd suggest you arrange to use Methylcobalmin for your oral or injection. Typically the injections are compounded by a compounding pharmacy.

Many people are turning up with the MTHFR mutation, and cannot methylate (activate) the cyano synthetic form. This would include folic acid too. There is a DNA test for this that you can request from your doctor.

Diabetics also get low in magnesium, as a factor of diabetes itself. Why they lose magnesium thru the urine is not understood at this time, but has been measured in various studies. So a good oral form, like SlowMag, one tablet twice a day will help that problem.
Here is their website with dietary suggestions also to increase foods that provide this mineral.
http://www.slowmag.com/
This product has a generic called Mag64, which you can have ordered for you at your pharmacy or buy online.

Taking acid blocking drugs for long periods of time, reduces acid in the stomach and that leads to poor absorption of magnesium, along with B12, folic acid, iron, calcium, zinc and some trace minerals too.

This is our PN forum with lots to read
http://neurotalk.psychcentral.com/forum20.html
We have been here since 2006 and before that since the late 1990's on another board location which crashed in 2006.
Over the years I have found quite a bit of useful information for nutrient replacement and also for peripheral neuropathy.

I've been trying to figure out how to use the quick reply following the instruction to click on the quick reply icons above. There are no icons above that say quick reply only ones that say reply. Why not direct users to click on a plain old reply icon instead. This is needlessly confusing. Would have save me a couple of frustrating hours. Lets see if this actually posts.

I never use quick reply box....

But you need to know that all new posters go into a waiting spot for screening before their post is approved. I happen to be online now and saw this quickly...but it can be a short delay until your posts go thru. You cannot post links and must follow our guidelines, and then you will pass thru that short waiting period if you comply. After the waiting period is over you can post links as long as they are not spammy and also the PM function will open to you.

Hi Birdman,

Just wanted to say Congrats on turning your life around and following healthy choices that brought your A1C down so well. You should be very proud of that. I am sorry to hear that your neuropathy has worsened. I hope you find the things that will work best for you in order to alleviate your PN. Wishing the best for you.

Thanks for your comments. I'm trying everything I'm learning. I recently came across alarming info regarding the inaccuracy of most B12 lab work in this country. Some say our tests are decades behind Japan and Germany. Most American Docs think a minimum safe level is 200 where the new data says 400 as a minimum. I thought I ruled out B12 deficiency with my last test but with this new information I face the daunting task of finding a physician who uses the new data and tests. That is going to take some work.

I never thought that in the US our medical community could be decades behind Japan and Germany in our testing methods. Makes me wonder what other medical areas are behind in?

A lot of people testing at 200 for B12 are at serious risk for a huge number of terrible outcomes. It is great coming to this website to sure up data collected from other sources. Problem is most Docs don't take kindly to their patients educating them. I need help from competent physicians not these frustrating detours. It is nice to know I'm around other more seasoned researchers here where I feel much of the real life saving happens.

Getting that new B12 test behind me is my top priority now.

Hi Birdman,

Are you sure you want to know?

ranking medical care by country

Some of the data is older; a few links provide updates, but they're still/yet nothing to brag about/take pride in, even though our expenditure per capita ranks first—IOW (to put it nicely) we're not getting what we're paying for.

IME, this is changing—albeit slowly. How information is presented plays a huge role; no-one likes to be told they're behind times and/or how to do their job, especially when they've expended/invested so much time & resources in their education/training.

Assembling a good support network may seem a daunting task (considering half of all doctors are below average) but it IS doable; it takes time & homework—motivation we've all got!

Add'l Info on assembling the right team of doctors

Doc

I met a guy the other day that flies to some resort town in Mexico to have his dental implants done. He cant afford to have it done here anymore. I asked about the quality of the work and he said it's state of the art. I read that there is a huge overseas industry of super affordable top notch hospitals attracting budget clients from all over the world in places like India and Thailand where you receive pampered care for a fraction of the prohibitive costs of having it done here. Many people are delivered to beautiful resorts to recuperate after a surgery and the savings are so substantial that it can still be far less expensive to fly half way around the globe to have these procedures with better outcomes than to have them done here. Enormous numbers of Americans die just from viruses they picked up in our hospitals while receiving treatments.

I have spent the last month trying to find yet another MD willing to order a very respected micro nutrient test that is supposed to give the most accurate results for things including B12 levels. The same tests adopted in Japan, Sweden, Finland and many other forward thinking and healthier countries than ours. I just saw a new doctor who wont even look at the downloaded brochure I tried to show him. I said it would mean a lot to me if he'd look at it and he said there was no chance. I live in Sonoma County California and you'd think I could find one MD with a good reputation forward thinking enough that is open to reasonable suggestions.

When I moved here a few years ago my first Doctor said I had liver disease so I went to a specialist to find out my liver was normal so I switched doctors who said I needed a CT scan for a sore neck I was complaining of. He said that the scan revealed a swollen lymph node in my neck and instructed me to see an associate in his medical group to surgically remove it for observation. I went to an E.N.T. specialist for a 2nd opinion who looked at the CT scan imagery and reported my lymph nodes were completely normal.

There is so much fraud it's impossible to know who to trust. I recently went to another doctor who said I had liver disease so he could send me through his referral mill so again I got a 2nd opinion finding nothing wrong. Yesterday I tried a fourth doctor from the same group as the first two who gave me a hard time regarding his associates. I shared with him my alarm at the intensity of my symptoms and my desire to find the source of my neuropathy as quickly as possible to see if a way could be found to arrest it. Being that my A1C was 5.2 he concluded that it might be unrelated to my type 2 diabetes.

After doing on line research I recently learned about medications that can contribute to neuropathies so I asked him about it reminding him I was on Metformin and Lansoprazole (a strong prescription antacid) and that my stomach acid levels could be reduced to a point where intrinsic factor might only be grabbing 10% of the B12 I was ingesting wich might be a contributor. He agreed it was possible and said he'd order the standard outdated serum test. It's like these jokers are doing everything not to help me. If all this nonsense is happening to me then you know it's a common practice.

No other doctors over the past 5 years of my neuropathy ever put it together that those drugs could have been the cause or a significant contributer in my protracted nerve damage even though it was common knowledge that these drugs are known to be major contributers. When these guys graduate do they forget critical thinking? I know these guys aren't all morons or are they?

I went to the trouble of printing him a color brochure for the lab bu he wouldn't even look at the brochure. He said if he accepted the brochure he'd discard it unread. I explained that it is the same test being done in other first world countries and the only lab in the USA that is equipped to do this test. I think it would serve patients if their doctors routinely had required mental evaluations. It doesn't matter that I'm going through hell. He is void of empathy and instead of giving me his assurance he'll do everything to get to the source of my dilemma ASAP he stands his ground and orders the half hearted serum B12 test and says he'll see me in 2 months.

So here I am trying to find yet another doctor. I have spent countless hours trying to find well reviewed doctors on Healthgrades and other Doctor rating sites. A lot of the reviews I read are exceptionally well composed and makes me wonder if doctors hire marketing agencies to place fake reviews on these websites. All of the duds I've seen had the highest ratings.

If half the doctors are good I wonder what part of the country would they be hiding in because I'm trying my best and not finding them here.

Thanks a lot!

I would try an integrative doctor, rather than a traditional MD.

There are many out there now, and many with MD degrees besides.

Google integrative (or holistic) doctor in California...
Here is one example:
http://www.holisticmedicine.org/cont...2&contentid=74

Some of these specialists do not take medicare or every type of insurance, however.