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Medical researchers and medical journals have been warning for decades that anyone (regardless of diet) can become B-12 deficient. Occasionally it happens early in life, but it becomes more common by middle age.

If B-12 deficiency is not eliminated while the damage is minor, it is common for the spinal cord to become damaged, or the patient may be misdiagnosed with Alzheimer's and die of heart failure. This may happen within a few years, or over decades, depending on the extent of malabsorption. And because symptoms are often so subtle for a long time, the problems may seem sudden, even though they have been worsening for a quite a while.

Research throughout recent decades has shown that people who have neurologic damage as a result of B-12 malabsorption are misdiagnosed much more often than thought previously. They are being allowed to worsen unnecessarily for lack of a safe and inexpensive vitamin.

People who have neurological symptoms should be tested and/or treated immediately (not after weeks, months or years of other testing or waiting). If testing is not possible, they should take at least 1000 mcg B-12 while continuing to look at other possibilities. If B-12 deficiency is the cause, they will almost surely stop the damage within weeks and then their bodies will have an opportunity to begin a months-long (years in more serious cases) process of repair. The earlier deficiency is treated, the more likely is complete repair.

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If the B-12 test result is clearly deficient, B-12 therapy should be given immediately and follow up tests should be scheduled within a month or so. B-12 treatment should be continued, because most people who malabsorb usually continue to do so for life (and in many cases malabsorption becomes more severe later in life).

Please obtain copes of your B-12 and other lab results. Hearing "It's normal" or "everything is fine" from most doctors is meaningless, because most don't know how to rule out or diagnose deficiency. In addition, it is surprising how often out-of-range results, along with other clues, are ignored.
Many doctors think that a B12 serum result within "normal" range rules out deficiency----it clearly does not, especially in a patient with neurological symptoms.

Many doctors still believe that ruling out anemia eliminates the possibility of B-12 deficiency--on the contrary, people low in B-12 who do not become anemic are more at risk for severe neurologic damage.

Many patients are damaged, even disabled while testing well into normal. Rare patients are deficient even when blood levels are high (in very rare cases into the 700s), because B-12 does not work in the blood. B12 works in the tissues. Some people have difficulty moving B12 from blood to tissues.

If the B-12 result is not clearly deficient, the patient with neurologic symptoms should have follow up tests: methylmalonic acid and homocysteine. The two follow-up tests have a good, but not perfect, record for exposing deficiency. In case you are one of the few who test "normal" all round but still need B12, it is a good idea to take at least 1000 mcg B-12 per day to cover the possibility that you are in that minority. In that case, one can only hope.

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If follow-up testing cannot be obtained right away, the patient should consider taking at least 1000 mcg of B-12 per day on the chance that it is needed. If deficiency is causing the damage, sufficient doses of B-12 will stop the damage and eventually allow some degree (sometimes 100%) of recovery over time.

If testing is done after B12 has been taken, the results will probably be normal; that does NOT mean that the person was not deficient prior to taking the vitamin or will not become deficient again if it is stopped.
B12 is safe and inexpensive. Too little of it is very dangerous.

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[rose]

Many doctors who know that B-12 deficiency can cause neurological damage believe that it only happens to elderly people. It can happen at any age, but it most often happens after 40 and increases in frequency as years pass.
Ironically, when elderly people show the signs of neuropathy, most doctors just assume it is age and don't diagnose and treat them either!

There are several problems, causing people to go undiagnosed until very serious damage is done. 1) many doctors don't know that testing for B-12 is important 2) many doctors think that a B-12 test result within a "normal" range is sufficient 3) many doctors just check for anemia, thinking that anyone who has B-12 deficiency must be anemic 4) very rare doctors don't even know that malabsorption of B-12 exists, or ignore signs of megaloblastic anemia (both are Inexcusable and megaloblastic/macrocytic anemia (wrongly referred to as "pernicious anemia") should cause even the dullest doctor to suspect B12 deficiency. The knowledge is much older than the doctors).

Anyone with neurological symptoms should be checked for B-12 deficiency. The patient should always request and get a copy of lab results. Never take a doctor's word that the B-12 result is "normal" or "fine," or even "high." And remember that even if it is in the "normal" range, that does not mean you are not deficient.

After years of reading medical literature on B12 and related subjects and speaking with many people, including patients and experts, I think that anyone with neurological symptoms should take B-12 (at least 1000 mcg) and B complex at a different time of day, regardless of B-12 testing results.

It is good to be tested, unless the patient has to spend time waiting or fighting to get proper testing, in which case it is better just to take the vitamin (and keep taking it) in hopes of stopping the damage and allowing repairs to begin. The longer deficiency persists and worsens, the worse the damage will be.

Proper functioning of one vitamin is dependent on the others, so it is a good idea to supplement the other B vitamins in appropriate amounts, just in case.

rose

[rose]

Most of the literature refer to "cobalamin" or "cyanocobalamin." Other forms of "cobalamin" (B12) have been developed since cyanocobalamin, but unfortunately most literature is written as if cyanocobalamin exclusively defines B12. Cyanocobalamin is a synthetic version of the vitamin. It works for most people, but some people cannot convert it efficiently to a form that can be used, and unconverted it is useless.

Hydroxocobalamin is preferred over cyanocobalamin by those who are familiar with it. It is useful in many cases more than cyanocobalamin, and it has better lasting power.

Methylcobalamin has some advantages neither of the other types do. It is the natural form of B12, made by the bacteria that must form natural B12. It does not need to be converted, and it has been proven very helpful not only for those who can be shown deficient in B12 but in many who with correct testing cannot: including some ALS and MS cases.

Methylcobalmin is easier to find that years ago, but many health food stores and pharmacies still have no clue. Often it is easier and less expensive to choose an excellent brand name and purchase it online, in at least 1000 mcg (1 gm) doses. Do not fall for marketing that requires you to spend a lot of extra money on something of equal or lesser value. Avoid hype.

There are alternate spellings of "methylcobalamin" in countries other than the USA.

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When B12 deficiency is doing the damage, it can be a "cure all," because when treated in time damage can be repaired. But that doesn't mean B12 will benefit everyone who is having some or all of the same problems, and those who suggest that it will are promoting old mythology that helps prevent B12 from being taken seriously. B12 deficiency has been known to be debilitating and deadly for many decades, and the condition began appearing in medical textbooks more than 100 years ago, before researchers discovered what was lacking.

Many people who are deficient will never get a diagnosis, because most doctors don't know how to properly rule out deficiency; even a doctor who cares enough to check a medical reference is likely to find decades-old information that prevents proper diagnostic procedure.

Other patients are diagnosed too late to avoid severe and irreparable damage.

This is tragic, since B12 is safe and inexpensive in very large doses. Taking B12 is not the danger--having too little threatens lifestyle and life itself.

In addition, a percentage of those with neurological or neuromuscular conditions who cannot be shown (even with the best current testing) to be deficient have been shown to derive great benefit from B12, especially the methylcobalamin type. This is backed up by solid research. Thus some exceptionally well informed physicians recommend 1000 mcg oral B12 (preferabily methylcobalamin form) to all of their patients with neurological symptoms or signs.

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The presence or absence of any one symptom or collection of symptoms cannot rule out B12 deficiency.

Most striking perhaps, because of multiple factors, an undernourished person can even gain weight. Many think an undernourished person must be wasting away.


This is excerpted from a mainstream medical textbook, one of the few reliable sources of information. After a very long list of possible symptoms and signs:

Goldman: Cecil Textbook of Medicine, 22nd ed., W. B. Saunders Company,

Chapter 175, page 1054

"None of these abnormalities are specific for cobalamin deficiency [B12 deficiency], and any of them may be present alone or in any combination and may vary greatly from patient to patient. None of the abnormalities are always seen in cobalamin deficiency, and the absence of any one or a combination of them does not exclude cobalamin deficiency.

The neuropsychiatric abnormalities may occur early or late in the course of cobalamin deficiency and with or without any of the hematologic or other abnormalities . . . How the deficiency of a single substance, such as cobalamin, can produce a clinical picture with such wide variations in severity and dissociation of various hematologic [regarding blood] and neuropsychiatric abnormalities is unknown."

[bolding and brackets added by rose]

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