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Old 09-16-2012, 07:53 AM #11
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The active form of folate is Metafolin, by Solgar OTC. It is called methylfolate. Folic acid is not active, and there is some concern that it may compete with methylfolate at the blood brain barrier.

This is not definitive yet, but some complex research papers are now suggesting to not use folic acid, but to use the methyl form for this reason. It is not common to be low in folic acid testing.
Our foods are highly fortified today in the US with it.

People with genetic errors in methylating inactive forms of the B12 and folic acid, develop elevated homocysteine. The blood tests for both in serum do not separate out the inactive and active forms. So it is best to take the activated forms since you are paying money already. Best to pay the same $$ and get the most useful. When you have a neurological problem, that suggests a problem metabolically as well. The doctors just haven't caught up with that concept yet.

methylcobalamin == active B12
methylFolate== active folic acid (called MetaFolin).
Thanks mrsD. I'll keep that in mind, I but will use up what I've already paid for, in the meantime. LOL. The levels will all be checked again later this year.

In your earlier post, you mentioned that you had worse pain before than you do now. Since you also mentioned diabetes, I'm guessing you reduced your pain thru diet?
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Old 09-16-2012, 09:09 AM #12
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Hi Nervous1,
I've been taking 900mg of Alpha Lipoic Acid for several months now (3-300mg gel caps that I found easier on the stomach). I cut the pain very slightly and about eliminated the so called stocking-glove feeling. I also was taking Befotiamine, for about 3 months with no noticeable effect, and have switched to daily thiamin (B1) tablets. Recently added 50mg B6, 1000mcg (cheap) B12, and 1600mg folic acid. The latter 2 were in the normal range, but my homocystiene level was high. My Neuro recommended the folic acid for this reason to raise my methylmalonic acid (likely due to low folate).

Do you have the "folded sock syndrome" where it feels like there is something behind your toes near the ball of the foot, that you are stepping on, all the time? If so, has the Nortryptilene done anything yet for that. The gabapentin barely touched it for me, but did reduce pins & needles and burning. The numbness isn't very great and pretty much just in my (larger) toes, and is not too noticeable when I first get out of bed in the AM.
Hi groucho,

Yes! I do have the "folded sock syndrome" mostly in the left foot though. I have a higher arch on the left foot, so there may be a mechanical aspect to this as well. I can feel the fascia underneath the foot in the arch become tight if I walk too much.
And Icant walk very far without this happening.
But, lately with the addition of Noritriptyline, it seems to be helping. My gait is better in the morning and last night the stocking feel was minimal. It is still too soon to tell as I need to attempt to chain together days of walking activity and see if I cramp up or start having foot pain.
Again usually the left is the worse for me.
Let's try to keep in touch since we have a very similar issue in the feet.
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Old 09-16-2012, 09:14 AM #13
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My worst pain was over 30 yrs ago... mostly feet, and then hands joined in during my pregnancy. It was because of hypothyroidism.

Now I have some insulin resistant issues (not diabetic yet), so I do control carbs and avoid sugar which helps. I have some spurs in my feet, cracked sesamoid bones, a left foot surgical scar which complicates that foot somewhat from an old tumor removal, and I have to avoid nightshade veggies, which I discovered cause burning for me.

But I haven't had the terrible pain, I had 30 years' back, even with my other foot issues. Back then it was CONSIDERABLE.

So my feet have taken a beating over the years, and now I consider myself lucky to be where I am now, pain wise. I have done hundreds of hours of research on the net over the last decade and I share my experience here and what I have learned as well.

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Originally Posted by groucho View Post
Thanks mrsD. I'll keep that in mind, I but will use up what I've already paid for, in the meantime. LOL. The levels will all be checked again later this year.

In your earlier post, you mentioned that you had worse pain before than you do now. Since you also mentioned diabetes, I'm guessing you reduced your pain thru diet?
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Old 09-16-2012, 10:45 AM #14
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Hi groucho,

Yes! I do have the "folded sock syndrome" mostly in the left foot though. I have a higher arch on the left foot, so there may be a mechanical aspect to this as well. I can feel the fascia underneath the foot in the arch become tight if I walk too much.
And Icant walk very far without this happening.
But, lately with the addition of Noritriptyline, it seems to be helping. My gait is better in the morning and last night the stocking feel was minimal. It is still too soon to tell as I need to attempt to chain together days of walking activity and see if I cramp up or start having foot pain.
Again usually the left is the worse for me.
Let's try to keep in touch since we have a very similar issue in the feet.
Incidentally, I am in contact with a fellow who I served in the Navy with, who also has it, and is also experiencing the "folded sock". He also started very recently on the Nortriptyline, as he wasn't able to tolerate the gabapentin. He believes our neuropathy may have been caused by possible exposure to Agent Orange, but I have reason to doubt that my own was. It will be another few days before I'm down to 300mg 3x daily on the gabapentine & want to stay at that level for a week or 10 days, just for a reference. Then I'll call my Neuro & he will phone in a prescription for the Nortriptyline for me. So, keep an eye on this thread, and thru me, you can see how another fellow is doing. Might pick up someone else on the way. You never know.

FYI: During my latest increases on the gabapentin, in search of relief, I went from 300mg 3x daily to 400mg 3x daily and again to 600mg 3x daily. During the last 2 increases, I had new strange feelings in my feet. Also some foot joint pains during my last increase & again during the reduction. After my nerves settled down, I felt little change in the "folded sock". The tingling, pins and needles, and burning wee less bothersome to me than the "folded sock", but don't care to get them back until I'm ready to try the N.
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Old 09-16-2012, 10:48 AM #15
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My worst pain was over 30 yrs ago... mostly feet, and then hands joined in during my pregnancy. It was because of hypothyroidism.

Now I have some insulin resistant issues (not diabetic yet), so I do control carbs and avoid sugar which helps. I have some spurs in my feet, cracked sesamoid bones, a left foot surgical scar which complicates that foot somewhat from an old tumor removal, and I have to avoid nightshade veggies, which I discovered cause burning for me.

But I haven't had the terrible pain, I had 30 years' back, even with my other foot issues. Back then it was CONSIDERABLE.

So my feet have taken a beating over the years, and now I consider myself lucky to be where I am now, pain wise. I have done hundreds of hours of research on the net over the last decade and I share my experience here and what I have learned as well.
Thanks for sharing, mrsD. I love my carbs & would hate to try to live without them.
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Old 09-16-2012, 11:31 AM #16
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I take 25mg of nortriptyline at night before bed and let the effects taper off during the day.
This is helping me some for now, but I am sure it will need modification in the future.
It didn't click right away for me, but am surprised your Dr started you at 25 mg. My Navy buddy is a big guy & was started at 10 mg daily. He told me just a few days earlier, he had started to use a cane & has been able to go without since starting the Nort, except when he's overdone it & the pain comes back. Not sure when he's going to his Dr, so don't know for sure if he'll be increasing his dose. I'd guess he's been on the N for about 10 days now. I also haven't heard anywhere yet that you build a tolerance to the tricyclics like you do with gabapentin, so I don't know about dose increases down the road.
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Old 09-16-2012, 12:05 PM #17
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It didn't click right away for me, but am surprised your Dr started you at 25 mg. My Navy buddy is a big guy & was started at 10 mg daily. He told me just a few days earlier, he had started to use a cane & has been able to go without since starting the Nort, except when he's overdone it & the pain comes back. Not sure when he's going to his Dr, so don't know for sure if he'll be increasing his dose. I'd guess he's been on the N for about 10 days now. I also haven't heard anywhere yet that you build a tolerance to the tricyclics like you do with gabapentin, so I don't know about dose increases down the road.
I think he probably started me at the 25mg because he knew I was slipping into depression and could possibly kill two birds with one stone?
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Old 09-16-2012, 01:24 PM #18
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I think he probably started me at the 25mg because he knew I was slipping into depression and could possibly kill two birds with one stone?
I told my Neurologist, while on a lower dose of Gabapentin, that i was less depressed and less anxious. I discovered while I still felt less anxious, that on the higher dose I was "jumpy". I would almost leap out of my chair while at dinner & my wife's cell went off next to me. (She's always getting calls from the grandkids. LOL)
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Old 09-20-2012, 12:10 PM #19
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Incidentally, I am in contact with a fellow who I served in the Navy with, who also has it, and is also experiencing the "folded sock". He also started very recently on the Nortriptyline, as he wasn't able to tolerate the gabapentin. He believes our neuropathy may have been caused by possible exposure to Agent Orange, but I have reason to doubt that my own was. It will be another few days before I'm down to 300mg 3x daily on the gabapentine & want to stay at that level for a week or 10 days, just for a reference. Then I'll call my Neuro & he will phone in a prescription for the Nortriptyline for me. So, keep an eye on this thread, and thru me, you can see how another fellow is doing. Might pick up someone else on the way. You never know.

FYI: During my latest increases on the gabapentin, in search of relief, I went from 300mg 3x daily to 400mg 3x daily and again to 600mg 3x daily. During the last 2 increases, I had new strange feelings in my feet. Also some foot joint pains during my last increase & again during the reduction. After my nerves settled down, I felt little change in the "folded sock". The tingling, pins and needles, and burning wee less bothersome to me than the "folded sock", but don't care to get them back until I'm ready to try the N.
Hi Groucho,

I have been taking noritryptline for well over a week now and I still have the folded sock syndrome as you put it. But, it seems to be less often and not as bad. Only time will tell.
Again, could also be the R Lipoic Acid helping too.
One thinkI noticed last night is that I had the folded sock feeling in the left foot and it was red/purple and puffy on the bottom of my foot.
Have you noticed that your foot is discolored when you experience the folded sock syndrome?
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Old 09-20-2012, 03:07 PM #20
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Hi Groucho,

I have been taking noritryptline for well over a week now and I still have the folded sock syndrome as you put it. But, it seems to be less often and not as bad. Only time will tell.
Again, could also be the R Lipoic Acid helping too.
One thinkI noticed last night is that I had the folded sock feeling in the left foot and it was red/purple and puffy on the bottom of my foot.
Have you noticed that your foot is discolored when you experience the folded sock syndrome?
I haven't noticed any discoloring on my foot. Are you wearing athletic, or comfortable shoes? I find that running shoes feel better, for me, than walking shoes. Less pressure on the folded sock area. My Navy buddy seems to be happy with the Nortrypteline, & since he's willing to consider upping the dose (he's on 10mg), that's saying something, as he hates to take pills for anything. He also has the folded sock. I understand the Nortryp makes you drowsy, & that's why it's taken in the evening. How long does it take before you're ready to call it a night?

I have symptoms any time I'm on my feet. I've cut back on the gabapentin from 1800mb daily to 900. My feet hurt extra while raising the dose & lowering it, too. Maybe because I unknowingly went beyond what actually was giving me maximum relief. Pretty uncomfortable today & it may stay that way until my nerves settle back down. I really want to hold off a little bit until I call the Neuro for a med change.
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