Welcome to NeuroTalk:

Today is a very good day for you!

We have a B12 thread here with lots of information, but people just won't read it.

So today Jason, one of our posters here, found this video.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

After you watch this, then go to my thread which goes into more detail about methylcobalamin (which is mentioned very briefly on the video) for dosing and how to take it (empty stomach only). My thread also explains MTHFR DNA mutations which lead to poor if any methylation of B12 to its active methylB12 form and the video did not go into that either.
http://neurotalk.psychcentral.com/thread85103.html

Rather than start with a shot gun approach of taking a huge list of things (some of them may not work for you, like the SAMe, etc). If you start with the most likely and work up... you will save money and understand your particular PN better.

Can you give us more details about your lifestyle, what RX drugs you took (antibiotics) or take now...like statins for cholesterol... which can CAUSE nerve damage. Solvents, hobbies, traumas, surgeries, vaccines, etc. All are possible triggers. Diabetic PN would lead to supplements specific for that.

But the most common is low B12, and that should be addressed first, as it might fix things easily. When you get the test get a Vit D also. Get the numbers and don't accept "normal" as the ranges are outdated, and you could be labeled normal when you are in fact low. In US you should be at least 400pg/ml, for B12.

With the high triglycerides, etc I would change the diet right away. Do you eat sugar and carbs? Sugar and other things are very bad for the nerves and body. That, along with supplements have been so great for my autonomic neuropathy and PN. Easy and safe. I would start there with diet and supplements for sure.

I agree, B12 needs to be checked, Vit D also. There are many things that might help you so I am happy you are here.

O.k. I have a few answers for you both. Thanks for the replies. I appreciate it.

First of all, I haven't been taking any prescription drugs other than fish oil for a long time. I did have a bad infection in my elbow a few years ago. I can't remember if that was before this started. I think it was. I was hospitalized for 3 days with intravenous antibiotics. Don't recall what they were and they sent me home with oral antibiotics.

My lifestyle was and still is very active. I'm a mountain and road biker, but that has been harder with my feet hurting all of the time. I used to walk all of the time and hike, but that's out the window at the moment.

I did get tested for B12 and Vitamin D. At the time Vitamin D was flagged as low. It was 28 ng/mL. Range says 30-80. B12 was 715 pg/mL and the range said greater than 211 as normal.

Years ago, 1996 I had back surgery to remove a bulging disc between L4-L5. My Neurologist did an MRI just a month or so ago and he didn't see anything that he felt could be causing the Neuropathy. I do have a few bulges, but nothing major.

So, I've never taken statins, never had chemo, was tested multiple times at all of the best labs for Lyme Disease, had multiple HIV tests, all negative.

Right now they are calling it Idiopathic Peripheral Neuropathy and that it may be hereditary. My 72 year old mother has some of the same symptoms, pain and burning at night, her feet feel like she is walking on a bunched up sock, etc. Her pain is not nearly as bad as mine.

Thanks again. Any thoughts would be appreciated.

I failed to mention in my previous post that I did see a Podiatrist who told me my problem was Tarsal Tunnel in both of my feet. He did Prednisone injections in both of my ankles 3 times and prescribed oral Prednisone for about 3 weeks.

My feet did feel much better after the shots, but the effect wore off after 2 or 3 weeks. Then he said we had to do a Tarsal Tunnel Release surgery in each foot. That's when I went back to my Rheumatologist and eventually to a Neurologist. The Neurologist did my EMG and wrote in the report: DO NOT HAVE TARSAL TUNNEL RELEASE SURGERY!!!!

So, I haven't and I also haven't been back to the podiatrist. I do think that after the shots in my ankles things got much worse. Maybe it's just my mind playing tricks on me, but my fee are so much worse now and that was last year right around this time.

ugh... 3 shots in the ankles! that is alot.

I had one steroid shot in my left ankle, several years before now, and
before it never swelled up, and now it does. I had had a spider bite on the other side of the ankle, and the ignorant podiatrist (who I did not return to) did the shot on the medial side because I still had inflammation from the bite (which required antibiotics, and steroids on vacation, oral).

That foot also had a surgery 50+yrs ago, to remove a tumor on the instep...so I always blamed that surgery. But that steroid shot in the ankle, could have also done "something" too. That ankle flares and improves, and flares again. On a schedule only it understands!

I'd really suggest you start with magnesium .. soak in epsom salts for a few days and see if there is improvement.

Also do you wear those tight boots? Hiking boots? Those could be compressing things and adding to problems. I'd really look to your footware for a while. I use an alternate lacing for my athletic shoes now and that really helps. They take the pressure off the instep and stop squeezing the nerves there.

Here is some homework.... a great website with drawings of the feet, showing where the nerves are, the tarsal ligaments, etc.
The shoe lacing is found there too.

http://www.northcoastfootcare.com/
There is so much on this site to read...all of it very good and useful.

Here are the alternate lacing techiques:
http://www.northcoastfootcare.com/pa...echniques.html

I use springy white spiral laces now( from Famous Footware), which are made for kids, so you probably wouldn't go for those. But they take the pressure off the instep and stop the numb toes I used to get sometimes.

I don't wear tight boots and in fact, haven't been hiking in a while. Just too painful.

So, I'm trying to decide what supplements I should start with. As I mentioned my b12 test was over 700. Should I start with: Benfotiamine? It seems to help many. I'm already taking Vitamin D.

I agree about not starting with everything, but there are so many listed that I'm not sure where to begin.

Benfotiamine would be a place to start, if you drink alcohol, or eat alot of sugar and carbs. People with insulin resistance or beginning impaired glucose tolerances, find it very helpful.
300mg a day for about 2 months.

Make sure you are using a good magnesium product, at 200mg a day elemental (which is 1/2 the RDA)
And you can try the fish oil/ krill oil, for anti-inflammatory effects.
3 fish oil or 2 Krill oil daily.

The acetyl carnitine would be for those who have toxin induced symptoms either from drugs or chemicals. But if you want to try it, start at 500mg a day in two divided doses of 250mg each.

See what happens in 2-3 months on this, including your B12.

You're probably OK without b12, especially if you eat red meat. Vit D is so inexpensive, and since you were low according to the tests, I'd stick to that one.

I am personally gibing the benfotiamine a shot. Here in Canada its not sold in stores so I went to I herb.com and ordered some. Its helpful to read the user reviews.

All of these take time , more than one bottle. Its tough, because we want results right away.
Alpha Lipoic Acid is a big one that is used with success, especially for diabetics. It ha some blood sugar lowering effects. I used to work at a health food store as the nutritionist.

As for medication, I have found that a combo of Lyrica and opiates to be what get me through the day..
Good luck

Idiopathic simply means that they haven't found a source for it. The fact that your Mom has some of the same symptoms and that it may be hereditary it might be worth looking into DNA blood testing. Hope you find the answer.

If your B 12 is 1350 should you still take B12?
Newly diagnosed but have had the neuropathy along with fibro for at least 5 years. Am very scared I am going to die because of it. It's so painful and read it could damage your heart and organs.
Thank you for any replies.