Hi Everyone,

I've been reading this message board a lot lately as my PN is getting worse and I'm looking for answers. I wanted to introduce myself and ask a few questions.

First of all, I'm a 45 year old male that started having symptoms probably 4 to 5 years ago. Initially I would get burning, pain and cramping in both of my feet at night. Usually worse when I just finished a bike ride. Over time, the pain in my feet got worse and worse to the point that it hurts to walk for any length of time greater than 5 minutes. I can't walk on my hardwood floors because they hurt so bad.

I first saw my family doctor and he did some blood tests which showed a number of things including high triglycerides, low HDL cholesterol, glucose a bit high - 118, and a few positive ANA readings that had me sent to a Rheumatologist.

She ordered two EMG's over two years, but really didn't do much else. The EMG's showed mild deficiencies, but nothing great.

Through all of this, my feet have gotten worse and worse and now they burn almost all of the time. I started seeing a Neurologist who prescribed Gabapentin. He then referred me to the University of Penn to their Peripheral Neuropathy specialist. The gabapentin was really bothering all of my joints. I had a hard time typing on my keyboard (and I work on a computer all day). So, he has now switched me to Elavil.

Both medications are making me terrible. Neither Doctor has suggested anything else other than increasing the meds and trying different ones until I get some relief. I'm not feeling very positive at all about any of this.

So, I saw the posts by Wing42 - A program to heal nerve damage and reduce PN symptoms - that has a whole plan laid out. I see these were written in 2006. It's been a number of years and I'm wondering how people who have followed this program are feeling now. How long does it take to feel some relief? Where do you buy all of the supplements? Looks like it could cost a fortune.

Sorry for the long post. I'm in a lot of pain and not feeling very good about the path that the Neurologists are laying out.

Hoping to find some other alternatives.

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.

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.

Welcome to NeuroTalk:

Were you taking vitamins when this test was done?
If so and you didn't discontinue them, for about 7 days this could
be a false elevation.

Can you give us more information about yourself?

Some autoimmune neuropathies begin to affect the autonomic nerves that supply the stomach and heart. But not all of them.
And not all neuropathies are due to low B12 either.
You could have a DNA methylation mutation that results in failure to methylate (activate) B12...so it cannot work properly.
There is another test called the MMA...which will demonstrate if your B12 actually works. Or you could have run into a lab error.

Many things are possible, therefore.

So please give us a history of what you were doing when this started, including all medications and vaccines you took or are taking.

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.