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Old 04-03-2013, 07:18 PM #1
CrimeofPassion CrimeofPassion is offline
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Exclamation Possible PN in My Feet - Need Advice

Long story short, since September I've been experiencing the following in BOTH of my feet:

Stinging, jabbing pain in both big toes
Tingling throughout the entire foot
Burning/a feeling of unusual heat throughout the entire foot

These symptoms get worse after standing or walking. I used to walk for an hour every day for exercise, but I've had to stop because it just makes my feet feel raw. Every day differs - some are better than others, and there have been a few weeks where the burning and tingling stopped, and I only had occasional jabs of pain in the big toes.

Unfortunately I went for an hour long walk last Friday night, and the tingling has returned.

I went to a podiatrist when it first started. She diagnosed me with Hallux Limitus, which I don't doubt that I have....but the symptoms don't match up. It doesn't seem like an explanation to me whatsoever. This feels like it's nerve-related, what with the tingling and burning.

About 2 years ago I experienced something similar in my hands. I had burning in the palms of my hands that eventually morphed into a cramping pain. The muscle along the edge of my hands, by the pinkies, would visibly spasm. Eventually after a few months it sort of just went away. But this issue with my feet persists.

What do you guys think? Sound familiar? I'm wary of going to see yet another doctor, especially as I've spent $1000's for some severe neck/shoulder pain I've had for almost 6 months now. It's been a nightmare of an experience, and I've been misdiagnosed and brushed off so much that I could just swear off doctors forever. I thought I'd try here first before dropping another $300 to see a specialist.

I am on Naproxen for the shoulder pain, and I take Amitriptyline for Interstitial Cystitis. Correct me if I'm wrong, but I think I've read that both of these meds can be used for PN...

I was thinking I'd maybe try some supplements. I've done a little digging and it looks like Alpha Lipoic Acid, B12, and Benfotiamine are highly recommended. Is there anything specific you would recommend I start out with? Specific supplements, certain brands, etc? Any help is much appreciated.
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ginnie (04-03-2013)
Old 04-03-2013, 10:42 PM #2
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Hi, CrimeofPassion.

I used to have similar symptoms to yours except it was never in my legs of feet, but it was in my hands, arms and back. Tingling, pain etc. So much so that I stopped going on my daily walk. And apart from working, all I would do is stay at home, not even using the computer (I thought I had RSI). It felt nerve-related to me too, not the muscles or bones or anything.

I think upping your B12 should be your first port of call, and it is a relatively cheap solutions. Your B12 should be at least 550 (and that is the low end), no matter what your dr tells you. The B12 thresh hold is too low and it is very much underdiagnosed.

Try to get your hands on some methylcobalamin B12. It's up to you how much you take. I think they come in either 1000 mg or 5000 mg sublingual (under the tongue) tablets. If you're not sure how you'll react to it, or are generally sensitive to medication, take half of the 1000 mg (which would be 500 mcg) tablets per day in the morning before food, and then gradually increase the dose if you are feeling ok.

Jarrow is the best brand, you can buy it from iherb.com for cheap, or amazon.com or whichever you prefer. You might see cyanocobalamin being sold, but that is the sub-par and synthetic version. Your body should react better to the methyl form and the good news is that it should start working within days, if that is the issue. If you wanted to try hydroxocobalamin injections from your dr, then you can do that as well, but if not, the methyl subglinguals should work just as well. Try to keep it under your tongue and against the gums for at least 30 mins. This is so that it will go into the blood stream. You might want to get tested whether you don't have instrinsic factor (it gets the B12 from food) in your stomach, eventually. Not being able to absorb B12 is a lifelong condition, that would need monitoring.

You may also need to take a couple of fish oil tablets per day, in order to replace any lost myelin at the end of the nerves. Try to eat foods high in potassium and iron since your body will rapidly start using any B12 that it is finally getting, which depletes iron and potassium stores. Keep an eye on your body and please post here if you need any help.
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ginnie (04-03-2013)
Old 04-03-2013, 11:54 PM #3
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Default Hello crime of passion

Welcome to Neuro Talk. There will be alot of information on this site to help you. Also there are many compassionate folks who will care.
I take it that you don't have heath insurance to cover all the doctors calls. You are right about seeing docs. that cost $300. You don't want to be brushed off for that amount of money. I don't blame you.

I have PN. You are spot on about the suppliments. I did not believe they would help. Didn't believe in all the B12 stuff etc. I wound up finding a doctor in a medical field you may not have heard of. She is a physiatrist. This type of doctor is a pain specialist first, but also deals with the whole body on a cellular level. After a year on these suppliments encluding B12 shots weekly, my PN has gotten better. It isn't gone, but the sharpness of it is greatly reduced. I was able to get off most of the pain killers I was on. She gives them to me as i need them, so I have them, but truthfully I don't take them much at all. I am walking better all the way around.
If you would try this type of doctor, just maybe you will find the type of help you need to get better. My doctor listens, and never brushed me off. I am glad I made this change. Look up this field of medicine, and you may find this as a direction to try.

I am here anytime to talk to. I hope that some relief from this PN can be found for you. Wish it didn't cost the money for these docs. but sometimes it is worth it to give another try. Keep in touch. ginnie
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Susanne C. (04-17-2013)
Old 04-04-2013, 08:21 AM #4
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Welcome to NeuroTalk:

It is best to get testing for B12 and vit D before starting the supplements to see where you are exactly. This helps to determine what doses you should take.

The B12 test should be at least 400pg/ml in US units, (don't accept "normal" from a doctor, because labs still report values that are very low in the 200's as "normal" and now we know that is very erroneous.)

There is a new more efficiently absorbed lipoic acid called Stabilized R lipoic acid. This allows for lower doses daily. Doctor's Best brand is one that is affordable and of high quality.
Also they make a good Benfotiamine. Both are available on iherb.com and Amazon, and some other discount sources.
You are not likely to find them locally in stores. Amazon offers free shipping on orders over $25.

Methylcobalamin is the active form of B12 and preferred, because people may not convert the older synthetic version well or at all. It is very inexpensive and bypasses genetic errors that are common with cyanocobalamin failures. Jarrow offers it and so does Puritan's Pride now. Puritan's is very good and economical.

There are many online sources for these, but I try and find quality and affordable prices for myself and others coming here to NT.

If your problems are inflammatory, you can test for this yourself.
If you feel better on aspirin or an NSAID, that implies some inflammatory problem like arthritis.
Inflammatory issues respond to fish oil or krill oil. Also you may look at Salonpas patches which are good on the feet, can be cut to fit toes and hands/fingers. The original form with methysaliclyate is the one I use with success.
http://www.salonpas.us/product/salonpas-original/
These are inexpensive and work well on localized areas and prevent the side effects that oral anti-inflammatories can cause (like naproxen, and aspirin). I buy mine in bulk at Costco. They are however inexpensive also at WalMart, Walgreen's and RiteAid.
Once you open the envelop they arrive in, I suggest storing in a ziploc type plastic baggie.
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Old 04-04-2013, 07:11 PM #5
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I do have insurance. Medical, dental, and vision through my 9-5 office job. Still, even with insurance the cost of medical treatment can be staggering. My most recent bill for a visit to an orthopedist cost me about $600. It was almost $300 just to walk in the door WITH coverage (and I was only in his office for about 8 minutes), while a cortisone shot injected into my shoulder bursa again cost almost $300, as they can apparently bill a brief 5 second shot as surgery – what a joke. And it didn’t even work. He misdiagnosed me as having shoulder bursitis. I might as well have thrown $600 down the toilet. So I’m feeling especially wary of doctors at the moment. It would probably cost another $200 just to see a neurologist, not including the costs of tests.

When I had the similar issue with my hands, it was shortly before I was scheduled to leave for a study abroad trip in China, so I was frantically trying to find help. No one suggested nerve issues – I was diagnosed with fibromyalgia. However, I’ve had a lot of doctors since who told me that they doubt I have true fibro. At this point, I don’t even care.

I picked up some cheap B12 this past weekend while at Walmart grabbing a Naproxen refill. It’s the subpar kind of B12, though (which I found out while browsing this forum), but I’ll take it until I can buy something else, most likely online. I figure it’s better than nothing. I also have some fish oil at home. Anyone know if all fish oils are created fairly equal, or if there are certain brands that are far superior to others? Buying supplements and vitamins is so frustrating. I need to find a new multivitamin as well. I was thinking of trying Rainbow Light Women’s One a Day.

Any topicals that are recommended for neuropathy? Special types of socks, shoes? I currently wear rocker-style shoes to help take the pressure off my toes.

Also, my bottle of B12 says to take it with food, but I read here that you should take it on an empty stomach. Anyone know which one is right?

I’m hoping that like with my hands, this will eventually go away. But I read some of the stories here and it’s frankly terrifying. A medical site I stumbled across said that the outlook for PN is that it gradually worsens and isn’t reversible. I’m going to ignore that for now. You can’t trust everything you read, and I think the outlook for PN depends heavily on the underlying cause. It seems to me like not all PN is created equal.

My feet were throbbing and tingling so much today that I felt like each had their own mini heart. I took my shoes off at work since I was just sitting at my desk and instantly felt some relief. They were still throbbing, but the buzzing laid off a bit. Dunno if that means my shoes are too tight? They don’t FEEL too tight, and the guy who made my custom arches had taken a look at them and said they were pretty decent shoes. I don’t wear high heels or any other similar torture devices! My feet are also sweating more than usual, and I’m noticing some slight muscle twitches here and there.

My vitamin D levels were actually tested a few years back. It was weird. At first they told me it was really low, but then when I had a follow up appointment with the doctor she said no, your levels are actually fairly normal. Doctors never seem to want to do tests. I ask for something and they just brush me off and say it's not necessary. I wonder how hard it would be to insist on a B12 test...
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ginnie (04-05-2013)
Old 04-04-2013, 09:01 PM #6
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CrimeofPassion, if you have cyano B12, try to get your hands on some methyl B12 sublinguals instead. However, within 3 days of taking B12 (and I have symptoms similar to yours), the tingling went away, so it should be ok for the short term.

I take B12 in the morning about an hour before breakfast, but because you aren't swallowing the pill, and are instead letting it get into your bloodstream through the gums, tongue and cheeks, then it shouldn't matter too much if you take it with food, as long as you try to let it dissolve as slowly as possible. Healing with B12 takes time.

A good quality fish oil is best, but whatever you can afford really. Perhaps others will have suggestions of brands for you.

Anything that makes you feel better is a good thing, such as menthol balm, socks, massages etc. But you really want to find out whether your body is lacking in something. You might be low in iron too, like me.

It's up to you whether you want to test for B12. All you can do is ask. Try to get tested before taking supplements, otherwise the test result will be artificially inflated and not a true representation. All of us here have had the brush off from one or many doctors in our quest to get better, so if it happens to you, you're in company. A lot of drs have no clue about it. If I followed their advice, I'd still be lying in bed resting my arms all day.
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ginnie (04-05-2013)
Old 04-05-2013, 06:00 AM #7
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Default I would still--

--take the B12 far apart from food--at least an hour before any food, or two hours after--so that if you are megadosing (taking at least 1000mcg at a time) you have the chance for maximum passive absorption of the cobalamin without anything for it to bind to it and interfere with it.

Even the so-called subligual tablets that one sucks on for a time tend not to be absorbed through the mouth, but tend to be swallowed and later absorbed in the small intestine. This is because the cobalamin molecule is the largest one normally used by the body for essential processes and it needs to be chemically transformed for usability (without getting too technical about this, it needs to be methylated, which is why many of us prefer the methylcobalamin form outright--fewer chemical hoops to jump through); this is also why it is easy to interfere with its absorption if it is consumed with other foodstuffs.

Mrs. D talks about the outmoded ranges that still appear on laboratory tests for serum B12--I think that anyone on a non-vegetarian diet should be thinking that the lowest acceptable range is 500 or even 550, as it is in Japan, not the 400 or so Mrs, D mentions and certainly not the 180 or 200 one sees on a lot of lab reports. People in those low ranges are almost certainly deficient and symptomatic; even people in the 400-500's often are. People with normal body chemistry without absorption problems who eat some animal products probably should be at least in the 600's, and many are higher. Dr. Snow's medical texts and Family Practice guidelines have noted some people have been symptomatic even in those ranges.
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Old 05-15-2013, 10:12 PM #8
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Default Possible PN in My Feet- Need advice

I'm new here and I was diagnosed with Peripheral Neuropathy about 2 months ago. With me, I have vibrations in my foot that started out in just the heel and now it's all over.

My Neurologist did a test and said I had it and it was significant, all the way up my leg. I too, have pain in my foot sometimes and feels like a cell phone going off in my foot and its tingly. I take Nortriptyline for it at night and it helps but still have symptoms in the day time.

A specialist may be the only one to tell you that. I went to my primary doctor with the symptoms first and he thought it could be a vitamin deficiency or diabetes or a thyroid thing, all which relate to it and glad he did the tests for those and luckily didn't have that but I went to the Neurologist for the Neuropathy, well before I knew it was that.

I exercise too, walk everyday and often times it helps. I was told by someone at work that her husbands doctor recommended using a rolling pin on the foot and rolling it back and fourth, it helps somehow.
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Old 05-16-2013, 08:23 PM #9
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I did see a neurologist, and unfortunately it was a huge waste of money. He didn't think my nerves were the issue.

Today marks day 31 of daily B12 supplementation (5000mcg). I received my Jarrow B-Right complex supplements, but I think they may be irritating my interstitial cystitis. I’ve only taken them for 2 days.

I’ve read that getting your B12 levels up can take a while (as a reminder, my level was around 490 or so). But I’m wondering if there’s a point at which I can probably say, “hmmm, maybe the underlying issue ISN’T my B12 level, since my symptoms are still occurring?” The last thing I want to do right now is rush back into the doctor’s office for another impressively useless yet expensive 5-10 minutes of my life, but I want to make sure I don’t give this TOO long before seeking further treatment.
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Old 05-17-2013, 03:33 AM #10
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A month is not a very long time for the B12 to work. Some people get quick results and others not.

Make sure you are taking it on an empty stomach for best results.

You can take the B-right every other day.
See if you have those bladder issues still. There is no vit C in it, which can often be a culprit.

When you say it is bothering your bladder, do you mean frequency, or pain, or both?
Frequency does come with B-complex, but B-right is not as strong as the B-50's and B-100's which do increase urination. That is why all B-complexes are best taken in the morning.
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