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Old 04-09-2013, 01:05 PM #1
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Default Thanks for the replies!

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.
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erjlg3 (04-09-2013)
Old 04-09-2013, 03:09 PM #2
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Default One more thing...

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.
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erjlg3 (04-09-2013)
Old 04-09-2013, 04:36 PM #3
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Lightbulb

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.
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tomboy mel (04-23-2013)
Old 04-10-2013, 10:44 AM #4
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Default Where to start.

Quote:
Originally Posted by mrsD View Post
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.

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.
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Old 04-10-2013, 10:50 AM #5
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Lightbulb

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.
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Old 04-10-2013, 10:58 AM #6
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Lightbulb

I forgot the R-lipoic acid stabilized by Doctor's Best... sorry.
100mg a day.

My computer is very slow today, as the DSL went down during a storm last night. It remains pokey today for some reason.
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Old 04-10-2013, 12:06 PM #7
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Default Thanks again.

Quote:
Originally Posted by mrsD View Post
I forgot the R-lipoic acid stabilized by Doctor's Best... sorry.
100mg a day.

My computer is very slow today, as the DSL went down during a storm last night. It remains pokey today for some reason.
I really appreciate your recommendations.

In your experience have you heard of any Neurologists suggesting any of these supplements? Neither of the Neurologists I've been to so far never mentioned anything other than drugs. I went to an Orthopedic Surgeon who specializes in feet and he suggested I take B6. He's the only one who suggested anything other than drugs.
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Old 04-10-2013, 03:09 PM #8
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Default

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
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Old 04-10-2013, 03:25 PM #9
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Quote:
Originally Posted by featherbullet View Post
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
I actually don't eat red meat anymore. I'm not eating much meat at all. I think I'll start with what MrsD recommended and see how that goes. At this point anything would be worth a try.
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Old 04-10-2013, 03:34 PM #10
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Default

Not eating meat started my problems. Make sure you get tested for B12 and get all of the amino acids, carnitine etc you miss.

I saw a nutritionist years ago and then started eating meat again.
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