should I see a neurologist?
 

Hi, Sorry but this is a long one.

My recent neuropathy symptoms keep expanding like never before through out my entire body. It had only been in my right foot before this. It started with increasingly burning parasthesia plus expanding numbness in my feet and patches where it feels like I have rope burns. I'm itching all over and have the sensation of steel wool splinters in my skin. This has all been happening over the past 3 weeks but most of the expansion of the symptoms over the past four days. Before this recent spike I could easily ignore the symptoms most of the time.

I finally was able to see another internist yesterday and he said that with my glucose levels being so well controlled he thought it might not be from my diabetes. He said it might be B12 deficiency or any number of other possible causes. When I tried to show him a popular test laboratory company based in Texas that does micro nutrient testing he wouldn't even look at the material I downloaded for him. He is only willing to do the old type serum test because according to him it is the best science backed test. I offered to pay out of pocket if he ordered the micronutrient test but he sternly asked me who am I going to trust? His 30 years experience or some non standard test? I said I'd still like to try it.

I scoured the Internet and this test kept being mentioned over and over by people who seemed very intelligent and I told him even if there is a remote chance that it could help shine some light would he reconsider and he said not a chance. I'm in pain and I'll try anything that is recommended by people who have gotten value from it. I wish my MD could know what it is to live with this. He offered some pain meds but those make my eyes twitch non stop and worsen my depression.

Until I know if it is a B12 deficiency would it be safe to get injections before having the results? I heard that B12 isn't known to be toxic so I figure why not get injected and see if symptoms reduce? I have diminished intrinsic factor function and haven't found sublingual to be effective. What would be the maximum safe dose of a methyl B12 injection? Can anyone offer a guess based on what has worked for them please?

I know many of you people have been through this kind of thing and I'd really like some advise. I am already on a lot of the most common supplements mentioned here and eating a diet that is very similar to the super low carb Paleo diet. Doing light yoga, balance, palates, stretching and tons of walking. It's not really a diet but a lifestyle I've adopted. A1C is 5.2 and steadily losing about 1/3 lb a day on average.

My doctor has arranged for old serum blood test but all he said was come back in two months. Two months? With the levels of discomfort I'm in I want to do all the tests now but he is in no hurry. That's cruel. I was hoping for a doctor to empathize with me and tell me he'd do everything in his power to find out the source of my neuropathy ASAP. That seems logical but clearly he is in no hurry to find answers even though my symptoms are constantly gnawing away at me. All he offered was nasty meds. I already had a nasty time with cymbalta and lyrica. It's like choosing discomfort or reduced discomfort and feeling like a zombie.

A month ago my symptoms were only some light tingling on my right ankle and some numbness in my biggest toes. Periodically I'd have mild parasthesia on my feet and ankles but it would vanish in a week. This time after getting my eating habits and exercise in balance you'd think it would reduce the likelihood that my neuropathy advancing. That's what I've read is the best way to keep ahead of the game but not so. it's like a wildfire out of control. I have been walking a lot and thought that all that light pounding might be a contributor but the Doctor said that walking cant damaged my nerves further.

Seems like my doctor should have insisted I see a neurologist right away but he didn't seem to think it was crucial. Do any of you think that this might be a smart time to see a neurologist? I keep reading you are your own best advocate.

I miss my old Doctor who retired. He really went the distance for his patients. Seems like doctors these days have so many patients they cant focus any attention beyond your appointment and don't seem to understand the urgency of the situation unless your head is hanging by a few threads. I suppose most of these medical group type doctors have seen it all and get jaded to the point where they don't really care if you are in pain. It seems like most doctors these days are in it for the lifestyle it affords them more than a desire to help suffering.

I never thought in a million years I'd be in a predicament like this just trying to find someone committed to getting me some answers or at least preparing me for what I'm facing. I never thought my retirement plans would be derailed like this. Thank you.

If you get injections BEFORE you know what level your B12 is at now...you will never be sure about it.

However, B12 itself is very benign, and not harmful to self administer. You do not need injections either, as there are many medical studies out now that demonstrate oral is as effective as
injections.

If you do supplement before testing, you should stop the supplement (oral) at least 5 days before the test to rule out artificially high results. Injections should be stopped at least a week or two before any test.

What IS important is that you need to understand that all people are NOT equal when it comes to activating synthetic cyano B12 ... genetic mutations in the methylation process are very common and synthetic will not work in those people.

Another test is called MMA and it measures whether B12 is being utilized in the tissues properly.

You really need to read the B12 thread here, as the links to all the NEW medical studies are on there, as well as other factors involved with B12 therapy.

The nutritional experts in the US are recommending that persons over 50 take a supplement of B12 ...
http://www.nutrition.gov/dietary-sup...al-supplements

This is the B12 informational thread on this forum:
http://neurotalk.psychcentral.com/thread85103.html

There is a link on that thread to a table of absorption data from a medical study showing Pernicious Anemia (low intrinsic factor) patients absorb about the same amount from oral B12 as normals. However you do have to TAKE oral properly....
it must be taken on an empty stomach for proper absorption in the intestine. You can forget about sublingual... sublinguals dissolve in saliva which is swallowed, and then becomes oral anyway.

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4
(The far right column is data from patients with no intrinsic factor.)

Try finding a D.O. doctor he would be more will to perform the test.

I use private labs to go and do many of my own testing for things like nutrition tests, cheaper, private and I can order any test I want.

good luck, you have to become your own best advocate, keep pressing, dont let one doctor telling you no stop you.

You've mentioned this a couple of times now. Do you have a link, or can you give us enough information so we can look this test up to try to understand the dilemma? Thanks.

Doc

intrinsic factor issues from oral
 

I take Metformin which significantly blocks B12. I also take lansoprazole for a hiatal hernia that can cause neuropathy by itself by reducing stomach acid to the point where intrinsic factor cant metabolize orally ingested B12 properly. These two meds combined can reduce oral B12 absorption more than 90% from what I've read. That means most of the B12 is passed through with no benefit.

If I repeat myself bear with me. The standard serum B12 test and the outdated minimum safe level of 200 can make you think you have enough B12. This has been been proven not to be the case for a number of reasons that contribute to false readings. The updated minimum levels are at 400 and the serum test is replaced by intracellular vitamin analysis and or micro nutrient testing which is far more accurate.

With the meds I'm on I have a good chance of being iron deficient. For me I have to bypass the oral route and get injections. There is only one lab in the country that performs the updated test like you get in Japan, Sweden, Finland, France, Switzerland Germany etc. It was developed by a Nobel prize lariat at a prominent university in Houston Texas. I hesitate to mention the Lab because because I'm not sure that is permitted and I don't want to be accused of advertising a brand. With the info I have supplied you, you can easily figure out which lab by it is by doing a little Googling.

On another note. I was thinking about buying my prescription meds from those online pharmacies that purport to sell generic versions without a prescription. I have looked for articles warning against this but cant find a single one. Have any of you tried substituting prescription meds this way?

Dr Smith, You mentioned something that sounded like "L'Argenine". Today when I went to the supplement shop they had lots of choices. How many grams would you start with? I did purchase some R-Alpha Lipoic acid 200 mg tablets. Being that this is supposed to be a better absorbed form of ALA is the mg dose the same or less?

Thank you for sharing with me.

Stopping before?
 

If B12 isn't toxic then why stop oral before adding injected dose to it?

I don't understand your question.

When one is TESTING for B12 levels, then stopping the supplement is important. Testing is done to show you what you have at that moment. If you are taking vitamins and get vitamin testing done, the amount floating around in the serum will not be your "normal" amount...it is artificially elevated. The ranges for the vitamins were made using people NOT taking any supplement. They are to show a base line of statistic norm therefore.

The injections are 1000mcg right into the tissues. According to the table link I gave you 150mcg were then measured in the serum. 1000mcg of oral gave 13mcg in the serum.

The injections are typically given daily for a few days, then once a week then once a month. Oral is taken once a day on an empty stomach every day.

So stopping the injections for at least a week is a good idea if you want to see what your values are more accurately. If you use any supplement for any length of time, and not establish a base line of "before".... then you will create a new baseline which will be higher overall. (and higher even than that if you don't stop taking the supplement).

The purpose of testing is to see what you have before any intervention is done. That then would guide any treatment decisions and choices.

B12 is only ONE treatment choice for PNers. It will really only work if you were low to begin with. And if you are not tested before starting supplements of it, you will never know your starting value in the first place. If your PN is caused by another reason, that would have to be discovered too.

One latent sign of low B12 is an elevated MCV in the blood testing CBC panel. If this is very high normal, or out of the normal high range...it SUGGESTS there is not enough B12 to make normal cells. Anemia as a sign is often one of the last symptoms of low B12 status, with neurological signs appearing first. Dr. Snow's article on the B12 thread explains that in his paper.

So far metformin is not a high B12 depleter. Studies suggest about 40% of patients do get low. This may reflect the marginally normal people reacting faster than those with higher B12levels having enough to buffer the drug's effects. Remember, people can store B12 in the liver, and have a time delay in showing actual low values and symptoms. They can coast for a while on the stored B12, if B12 cannot be absorbed from animal sourced foods. I think this time factor is responsible for the long time it took for medicine to discover the negative effects of metformin and acid blocking drugs.

The acid blocking drugs for the stomach are more serious offenders IMO.

It took more than a little. I did that first off, and got 4 Labs in Texas on the first page alone, which is why I asked the question. You can answer a direct question here ( I think the notion that I might be a shill is amusing/laughable :ROTFLMAO: Thanks for the yuk! :D)

I did some digging on Spectracell's test. I can't find any credible documentation that it's the standard used in any of those countries (scams exist outside the US as well, e.g the infamous Nigerian Scam) or that it's any kind of "gold standard". In fact, aside from anecdotal/testimonials (which is how scams operate) I can't find any documentation of any kind supporting the test or the science. (no studies whatsoever supporting its validity). On the contrary, I found a LOT of criticism and cautions of scam and quackery (scam spectracell).

The test has not been through the FDA approval process. That's not an indictment in and of itself, but considered with the other criticisms, a picture begins forming. It's not been accepted by the medical community, which explains why the doctors you've seen have been reluctant/refused to order it.

One example out of many: http://www.quora.com/Health-and-Well...-blood-testing

Regarding their claim that "Most private indemnity insurance carriers cover micronutrient testing" not everyone agrees. And I find that several more BCBS companies than they acknowledge do not cover the test (i.e. Alabama). Those that don't cover it say the test is "investigational/experimental" (i.e. again—no studies supporting the test or undrlying science).

At least one site questioned whether doctors who do order the test get kickbacks from the company. I wondered about this myself, because members of at least 2 other sites got the test thru his/her doctors (not thru ins.) for under $100 (Who's getting the other ~$300?) Their site also says, "SpectraCell accepts Medicare assignment and Medicare covers most of the tests." MOST of the tests? Spectracell offers many tests, some of which ARE FDA approved. Does that statement (not) include this micronutrient test? I don't know, but I'm not the first to ask the question.

I also see that Spectracell has some kind of doctor locator, but that most of the doctors on it are chiropractors. :rolleyes: Don't get me started.

FWIW, they're also mentioned on Quackwatch.

Bottom line, when I see one questionable claim on a company's website, I begin to question their other claims, and this company's website is rife with blue-sky, too-good-too-be-true statements.

If you want to buy into the hype, it's your money, but IMO, medicine should be about science—not belief. After reading what I have on the flipside, I can see/understand (even with reservations) why your doctors have been skeptical. We've already got articles here posted by MrsD that only a small amount of oral B12 is absorbed. So what? That's why we take 1000-5000 mcg. The stuff is cheap (you can buy a buttload of it for the cost of Spectracell's test). If 1000-5000 mcg. isn't enough, take 10,000.

You must not have used the right search terms. I'd never do it.

Is it Legal to Buy Prescription Drugs from Online Pharmacies?

Buying prescription drugs on the Internet: Promises and pitfalls

online pharmacy risks

Wasn't me, or it was something entirely different. L-tryptophan? Acetyl-L-Carnitine? N-Acetyl-Cysteine? This is another case where a link to the original post would be helpful.

That may be overkill. Generally, 100 mg. of RLA works as well as 600 mg. of ALA. You don't have to tell me the math doesn't work; that's just how it comes out. There are several threads about it in the archives. My RLA is the stabilized form (which is purportedly absorbed better & has better shelf-survivability) in capsule form. If yours is not, and is in tablets, I'd just cut them in half and take them until that first bottle is gone—that's what I did.

Doc

Buying drugs online (esp without an RX) is risky business. It is even risky to your computer to VISIT an online place like that, as they can download malware or trojans or viruses right onto your computer!

Many online suppliers sell fake drugs...they look like what you want but inside there is no drug at all, or another drug substituted. Very risky business. And after spending your money, giving them your credit card number---blech another risk--you run a high probability of having it confiscated by customs.

We do not allow illegal drug sites linked to here, for safety and legal reasons. Our guidelines include this fact.

Dr. Smith did a good job with his Spectracell comments.
There is no need to have them do testing, for the majority of people who need nutrient testing. For one thing measuring intracellular contents requires another RANGE to work with, because the nutrient tests we have now use only serum levels.

In some cases cells burst when taken in a venipuncture sample.
When this happens the red cells contents spill over into the serum and give a false (factitious) reading. This happens most commonly with potassium, but it can happen with anything.
In this case the INTRAcellular testing may be helpful. But most doctors don't have experience with it.

The testing we have today for B12 traditionally is
1) serum levels
2) MMA levels to see if B12 is being utilized by the tissues
3) transcobalamin --a new test--to measure the carrier of the B12 -- not all labs are doing this one yet.

4) and also very helpful is the DNA test for the MTHFR mutation, to see if the patient can activate folic acid and cobalamins.

Taking an oral methycobalamin today costs pennies a day. Within 3 months you can have levels up to 1000-2000 pg/ml. There isn't a single treatment, drug or nutrient, that is this available, so inexpensively, OTC and successful.

Of course if your B12 is showing normal (above 400pg/ml) you probably have something else going on to cause your PN.
You have to take the oral form on an empty stomach with no food for about an hour so it can be passively absorbed. Food will prevent this.
The dose of 1000mcg in the test that I listed to you...gave 13mcg in the serum. This is 3 to 4 times the RDA .

? for MrsD....
 

If my serum B12 is now in the 600's (was in the low 200's) from injections, would it mean I am methylating properly? I was considering the DNA test before, but found out my new levels. Thanks!

600 is not very high for injections. Many of us here get 1000 or above from oral.
It is hard to say in your case. If you sleep better and feel better
You are probably converting. The MMA test would be high if
you were not converting.
The DNA test is not that expensive though.

The serum B12 test is only a general marker, it does not
Show everything possible.

Methyl cobalamin is the cofactor for making melatonin in
The brain.. So non-methylators don't sleep well as a symptom
of non conversion.

Did you say SpectraCell?
 

If you go to their website they have lists of "clinicians" that provide their tests at obscure places like The Mayo Clinics, Scripps Labs in LaJolla CA and many other questionable medical clinics in the country. I cant quote all the sources for every article and video lecture I've absorbed where SpectraCell was referenced. You'll have to dig too and if after doing so you feel it be a scam so be it.

In the meanwhile I'll be experimenting with diatomaceous earth cupcake recipes and trying to find an Internist in my town that offers these tests. The highest rated sports medicine Internist in my area offers them but his staff but his staff is so overwhelmed that I've been unable to make an appointment. Many people that are really into nutrition assure me they are the are without peer.

Believe it or not there are lots of people that know what scams are. We weigh the risks and if we feel if it is worth it then we make our choice and give things a try or not. I'm sure Karen guessed there would be doubters trying to make her look DE experience look naive and foolish but I think most can google around and see if it is another scam or if it's worth having a go or not all by themselves.

Stopping B12 Before testing
 

Thank you Mrs D for clearing that up. Stopping B12 before testing makes sense.

DE cupcakes? Interesting, I just put it in water and drink.

Hi Stacy,
I saw a post before that you said you could order your own lab test. If you don't mind me asking where do you live. I have never heard of being able to order any test you want without a doctors order.

Hopeful:)

Hi Birdman,

I almost want to say ditto to what Dr. Smith and Mrs. posted.

I don't know anything about the spectracell testing but I do know that I would NEVER buy prescriptions online. The internet is a haven for rip-off artists. Remember these people could care less what they put in the pills or how it will affect the person they are selling them to.

There have been many articles and TV shows on recently concerning this problem.

I hear your pain and fear. I also had a sudden onset of neuropathy that progressed very quickly. I understand that you can become desperate and willing to try anything.

My best advice is to try to calm down (our stress makes it worse). Yes I know that is easier said then done. It took me a while.

When we lower our fear level it makes it a little easier to be realistic about the avenues we are willing to travel for a cure or at least some relief.

I hope your pain level decreases and you get your answers.

You pretty much can, but don't expect your insurance to pay for anything not ordered by your doctor. There are plenty of companies who are more than happy to take patients' money for tests; they don't really care where it comes from. Any company should be checked out for accuracy, complaints, costs, reputation, etc. Caveat emptor.

order your own lab test

Doc

I use:

http://www.anylabtestnow.com/

You can type in your zip code and see if they have one near you.

That's exactly what I did. :Dunno:

Let me be the one to beg forgiveness if I've said any of this, of if you've heard it, before. Some of it will be for the benefit of others, current & future, who may come upon this thread.

When I read (present tense) your words—many of which I could have written myself—I recognize and feel where so many of us are—or have been. I perceive anxiety/fear, frustration, and desperation. I also infer/perceive a vulnerability that can arise from those feelings.

PN is a life-changing event/illness. Those of us it affects severely enough to come here are (virtually without exception) experiencing the Kübler-Ross model with respect to life-changing events (in this case health/illness issues) whether chronic or curable/reversible.

One of those stages is bargaining; we're willing to believe/do/try almost anything to help ourselves.
I've been there. I may be there again (and again). There are no rules when it comes to those stages except that we all go through them—some of them more than once.

None of this is any secret. Neither is it a secret that there are countless people in the world ready to exploit other peoples' pain & suffering and resultant vulnerability in order to part them from whatever they have, and they have no compunction about what they're willing to say/do to accomplish that.

With that in mind, this test isn't the first new thing to come down the pipe. The archives, google, youtube... are full of more than I can even imagine—supplements/formulas, electronic devices, books, topicals, and yes... tests that allegedly tell us what's wrong with us and what we need to do/take to rectify/purify/cure us. Another controversial test deemed "inappropriate" is the ALCAT test.

Quote:

"These results have been shown to not be reproducible, give different results when duplicate samples are analysed blindly, don't correlate with those from conventional testing, and 'diagnose' food hypersensitivity in subjects with conditions where food allergy is not considered to play a pathogenic role."

Some of these "advances" may have some scientific basis in theory, and some even have FDA approval (my previous comment about FDA approval goes both ways). Many of these "advances" have been discussed here. The Rebuilder comes to mind (E Pluribus Unum). Search the archives for Rebuilder. (Links to archive searches don't always work here. :()

Some things these "advances" all have in common include: Names with letters following them (people who seem very intelligent), glowing endorsements/recommendations/testimonials (mention in many places), scientific "proof" of their efficacy/value (seemingly cogent explanations), new cutting-edge technology that no-one else has, or recognizes... in short, everything you'd expect to find in a top-shelf bonafide advance—except supporting evidence/science.

I've been sucked in myself, and have spent/p'd-away literally thousand$ chasing rainbows. I'm too embarrassed to mention some of them. What's worse, my DW was willing to spend even more, because she loves me, can't bear to see me suffer, and would sacrifice all.

When some of these advances actually yield positive results (which can happen in ANY crapgame, and that's something purveyors [can] count on) it complicates/obscure matters. Unfortunately, the placebo effect has lots of inadvertant results beyond therapeutic statistical anomaly. One is a flawed cause-effect rationale.

With experience(s) on this board, awareness of the stages of grief, some formal training in objective observation, a somewhat skeptical nature, and ongoing self-interest in improving my own plight, when I see some new development mentioned here or elswhere, and/or my curiosity is piqued, I look into them.

First, I look at the links/webpages originally provided, and at the company's (when applicable) website in general. Then I look to see what other kinds of links come up—what are they selling, where are they being talked about—credible mainstream sites/publications or healthcare/scientific fringe? What I do not see can sometimes be more telling than what I do see. Then I look for supporting evidence/studies. Then I look for/at criticisms.

I have done, and do, pretty much the same kind of analysis on other things, so please don't feel singled out, or that I have some kind of grudge here. I went into it with an open mind because I'd never heard about this before you mentioned it, and in the spirit of what you asked:

...I offered what I found out. Like others here (Neuropathy / Health forums skew perception??), my desire/intent is to share my experience. My experience tells me in this case, caveat emptor.

I take it the same applies to testing? :Dunno: I appreciate your willingness to take a flyer. I'm fond of saying, "If it can't hurt to try it, then it can't hurt to try it." But I'm generally talking about a supplement, exercise, diet, things like that. What harm is there in a bogus test? Beyond the financial, no test is infallible/without error (which can happen with a serum test as well, but not at ~$400 a pop). Time/energy wasted pursuing potentially false leeds that could have been spent in supportable protocols. I don't know enough medicine to even think of all the potential pitfalls/problems, but I know that I don't know. Maybe that's a good follow-up question to ask.

Doc