[MelodyL]

Originally Posted by AlwaysLearning

Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.

Hi, I started taking 5000 of the Methyl B-12 over 2 years ago. Best thing I ever did for my neuropathy. I now take it about 3 times a week.

Hope it works for you the same way it worked for me.

Take care

Melody

[zeeclass6]

I have also been suffering from capsilitus in my two big toes for the past 8 weeks! (Diagnosed via an MRI). I wore some new shoes (flats, with my orthotics -- go figure!!!) and apparently that caused it (never had it ever before). The shoes looked sensible and good (cute maryjanes made by Aetrex) but for some reason they made my big toes hurt after wearing them for only a couple of days for a few hours each day. The whole thing is really strange. My podiatrist doesn't know why it happened.

Now I have to wonder if my sloooooow healing of the capsilitus is due to B-12 deficiency. (I know for sure it's not gout -- I don't have gout). I'm getting very impatient from sitting/lying around for 8 weeks waiting for my stupid toes to stop hurting (left is worse than the right), and am considering the cortisone shots. Hearing that the shots worked for you is encouraging to me. I need to start exercising again, and this inability to walk well has really been annoying. I can only wear one pair of shoes -- my sneakers with my orthotics! Everything else hurts my big toe, even my wooly slippers which are usually very comfortable! It was so embarrassing recently to go to a professional meeting all dressed up, but wearing my dirty old sneakers, limping around.

Like you, I eat a well-rounded sensible diet. Unlike you, I'm about 15 pounds overweight. But anyway, my Vitamin D was in the toilet as well a few years ago. I now take 4,000 IU daily and my level is around 50 now. Interestingly, my 15-year-old daughter had a blood test recently and we found that her vitamin D level was 35. I need to talk to her pediatrician to see if she should also be taking a supplement. She eats a lot of dairy and gets sun and is healthy except for some anxiety issues (the reason for the blood test) -- no reason for her to be borderline deficient!!! I think that everyone should have their Vit D and B vitamins checked. It's so important!

Good for your for refusing the Lyrica. A neurologist wanted to put me on that for some sciatic pain I had been experiencing and I said NO WAY. I just didn't have the type of symptoms that were necessary to take a drug like that -- especially given the possible side effects. In that case, a little acupuncture and some skilled shiatsu massage solved the problem instead of drugs.

Originally Posted by AlwaysLearning

Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.

[glenntaj]

--for various people in this thread:

AlwaysLearning, if it can be confirmed that you have low levels of D, B's, etc., for no particular reason, malabsorption should be investigated, and the most obvious tests for that are for parietal antibodies and for anti-gliadin and anti-transglutaminase antibodies associated with celiac/gluten sensitivity; both of these are more common than most doctors generally think and can lead to malabsorption of nutrients in the gastric tract.

Also, as regards skin biopsy, the ranges for what constitutes a "definite" small-fiber neuropathy were somewhat arbitrarily established during the original MacArthur research protocols at Johns Hopkins; specifically, intraepidermal nerve fiber density lower than the 5th percentile or higher than the 95th, compared to the original "normal" control groups, was considered definite evidence of small-fiber syndromes. There is a lot of variation in what constitutes normal in an individual, however. People's nerve fiber density does tend to decline with age, even in people without symptoms. And it's hard to know what a person's "starting point" was by the time they have symptoms and get a skin biopsy. (Someone may have declined from a "normal for them" 70th percentile reading to the 25th percentile, for example--but this would still be read as "normal density" on a skin biopsy enumeration, as it would be almost impossible to have an individual pre-neuropathy figure to compare to.) This is why savvy neurologists won't just go by the numbers--they'll ask for reports of condition of the nerve fibers observed--is there excessive branching, swelling, deteriorated fibers evident--and use a fuller clinical picture, including symptoms, to determine if there is a small-fiber neuropathy.

[AlwaysLearning]

Originally Posted by MelodyL

Hi, I started taking 5000 of the Methyl B-12 over 2 years ago. Best thing I ever did for my neuropathy. I now take it about 3 times a week.

Hope it works for you the same way it worked for me.

Take care

Melody

My multi has B-12 in the methyl flavor, but I have been taking it with food
I'm hopeful I'll have similar results as you.
Thanks for your comment.

[AlwaysLearning]

Originally Posted by zeeclass6

I have also been suffering from capsilitus in my two big toes for the past 8 weeks! (Diagnosed via an MRI). I wore some new shoes (flats, with my orthotics -- go figure!!!) and apparently that caused it (never had it ever before). The shoes looked sensible and good (cute maryjanes made by Aetrex) but for some reason they made my big toes hurt after wearing them for only a couple of days for a few hours each day. The whole thing is really strange. My podiatrist doesn't know why it happened.


Now I have to wonder if my sloooooow healing of the capsilitus is due to B-12 deficiency. (I know for sure it's not gout -- I don't have gout). I'm getting very impatient from sitting/lying around for 8 weeks waiting for my stupid toes to stop hurting (left is worse than the right), and am considering the cortisone shots. Hearing that the shots worked for you is encouraging to me. I need to start exercising again, and this inability to walk well has really been annoying. I can only wear one pair of shoes -- my sneakers with my orthotics! Everything else hurts my big toe, even my wooly slippers which are usually very comfortable! It was so embarrassing recently to go to a professional meeting all dressed up, but wearing my dirty old sneakers, limping around.

Like you, I eat a well-rounded sensible diet. Unlike you, I'm about 15 pounds overweight. But anyway, my Vitamin D was in the toilet as well a few years ago. I now take 4,000 IU daily and my level is around 50 now. Interestingly, my 15-year-old daughter had a blood test recently and we found that her vitamin D level was 35. I need to talk to her pediatrician to see if she should also be taking a supplement. She eats a lot of dairy and gets sun and is healthy except for some anxiety issues (the reason for the blood test) -- no reason for her to be borderline deficient!!! I think that everyone should have their Vit D and B vitamins checked. It's so important!

Good for your for refusing the Lyrica. A neurologist wanted to put me on that for some sciatic pain I had been experiencing and I said NO WAY. I just didn't have the type of symptoms that were necessary to take a drug like that -- especially given the possible side effects. In that case, a little acupuncture and some skilled shiatsu massage solved the problem instead of drugs.

The capsulitis became very apparent when I got off my mare, after dropping my foot the last 6-8 inches to the ground. A fews weeks before that, I had tried a new pair of hiking boots. I laced them pretty tight, and used a lace locking tie to try to avoid major heel slippage. I only wore them about 30 minutes, but my feet didn't feel the same after that. I think I caused or exacerbated both issues with the tight shoes.

My sneakers made my feet hurt more. They were comfy, but made my feet fatigued after a while. Like, they didn't bend in the same place as my feet? Maybe that was the issue with your mary janes. I got a new pair of sneakers which are more comfy. I also got a pair of Teva sandals, with the adjustable velcro across the toe, instep, and heel. I made the straps as loose as I could, so they wouldn't hug my feet. Pretty sloppy, but I wore them that way for weeks. They have some arch support, and some tread. I think they helped, or at least didn't make issues worse.

If you do get the cortisone injections, be aware they hurt plenty. But, it's just during the actual injection. The second round of injections is less painful, as hopefully you have healed some. Hope you get relief soon.

[AlwaysLearning]

Originally Posted by glenntaj

--for various people in this thread:

AlwaysLearning, if it can be confirmed that you have low levels of D, B's, etc., for no particular reason, malabsorption should be investigated, and the most obvious tests for that are for parietal antibodies and for anti-gliadin and anti-transglutaminase antibodies associated with celiac/gluten sensitivity; both of these are more common than most doctors generally think and can lead to malabsorption of nutrients in the gastric tract.

Also, as regards skin biopsy, the ranges for what constitutes a "definite" small-fiber neuropathy were somewhat arbitrarily established during the original MacArthur research protocols at Johns Hopkins; specifically, intraepidermal nerve fiber density lower than the 5th percentile or higher than the 95th, compared to the original "normal" control groups, was considered definite evidence of small-fiber syndromes. There is a lot of variation in what constitutes normal in an individual, however. People's nerve fiber density does tend to decline with age, even in people without symptoms. And it's hard to know what a person's "starting point" was by the time they have symptoms and get a skin biopsy. (Someone may have declined from a "normal for them" 70th percentile reading to the 25th percentile, for example--but this would still be read as "normal density" on a skin biopsy enumeration, as it would be almost impossible to have an individual pre-neuropathy figure to compare to.) This is why savvy neurologists won't just go by the numbers--they'll ask for reports of condition of the nerve fibers observed--is there excessive branching, swelling, deteriorated fibers evident--and use a fuller clinical picture, including symptoms, to determine if there is a small-fiber neuropathy.

Glenntaj,

I have never looked into celiac/gluten sensitivity, but I may have a reason to now. I will discuss this with my doc.

Thank you.

[MelodyL]

Originally Posted by AlwaysLearning

My multi has B-12 in the methyl flavor, but I have been taking it with food
I'm hopeful I'll have similar results as you.
Thanks for your comment.

It should be taken on an empty stomach. I began with 1000 once a day and after one week I knew I had to take the 5000. I started with iherb.com and now we get all our stuff from Puritans because of the buy 2 get 3 free offers.

So far, so good.

Wishing you well!!!

Melody

[zeeclass6]

Just wondering -- is it better to split up your B-12 dose during the day, or take it all at once in the morning? I just upped my dose to 5,000 mg of methyl and wasn't sure if I should cut it in half and take half in the morning on an empty stomach, and half in the afternoon two hours after lunch.

In theory, could taking some B-12 in the early afternoon give you more energy for late in the afternoon? Or does it really not matter?

[mrsD]

It is better to take all at once... on empty stomach.

If you have intact intrinsic factor this is less of an issue.

But those who show up here with lows, have some problem or they would not be low and have the neuro symptoms.

When intrinsic factor is not working (for whatever reason), the only way B12 is absorbed is by passive osmosis thru the lining of the GI tract. The higher the concentration present, the more that will get thru. 5mg will result in more being absorbed, which is still a very small amount. 1mg also is absorbed, but 5 times less than the larger dose.

Some things have receptors controlling absorption, or a biochemical barrier. Zinc, magnesium, calcium, carnitine, Neurontin, are examples of limited absorption, needing perhaps divided doses.

[ger715]

Originally Posted by mrsD

Yes, I think all 3 are helpful for some people. R-lipoic helps with mitochondrial functions, and Benfotiamine is a cofactor in
metabolism carbohydrates and of certain dehydrogenase enzymes ...one of which metabolizes alcohols and aldehydes.

Mrs. D. Do you think adding Magnesium lactate and COQ10 acetyl L carnitine with the Methyl B12 lmg, R-Lipoic Acid 100mg and Benfotiamine 150 mg that I am already taking would round out a regimen of vitamins/supplements for aiding the possible regenerating of the nerves?