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Old 10-03-2006, 02:37 PM
rose rose is offline
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Default B12 background information

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, and even the brain may, 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 symptoms are often so subtle for quite a while that the problems seem sudden, even though they have been worsening for a quite a while.

Research during recent decades has shown that people who have neurologic damage as a result of B-12 malabsorption are misdiagnosed even more often than thought previously. And people who do not show signs of anemia (which most doctors think must occur in anyone B12 deficient) are even more likely to be damaged neurologically. 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 immediate testing is not possible, they should take at least 1000 mcg B-12 per day, 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.

It is important to note that sometimes a very long time elapses before it is obvious that the B12 is doing anything. The body can do a lot of work (and even experience temporary worsened symptoms) while working to stop damage and repair.

rose
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  #2  
Old 10-03-2006, 02:42 PM
rose rose is offline
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Default Diagnosis

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 continue to do so for 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 they don't know how to 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 think 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, because B-12 does not work in the blood; it works in the tissues. Some people can absorb B-12, but they cannot deliver it 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.

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.
A more detailed description of diagnostic procedures for your doctor is available in current medical textbooks, such as Goldman: Cecil Textbook of Medicine, 21st Ed., Copyright © 2000 (or 2004) W. B. Saunders Company.

Once the damage has been stopped, it is time to look for the cause of malabsorption or failure to convert, transport or store B12 normally. Unfortunately, most doctors will not be interested in finding the reason. And worse yet for some people, many assume that if B12 deficiency did the damage, all problems will immediately disappear as soon as the B12 level is up. Good grief.

rose
http://roseannster.googlepages.com/home

Last edited by rose; 10-03-2006 at 08:29 PM.
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  #3  
Old 10-16-2006, 10:20 PM
rose rose is offline
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Default Sorry I am so slow adding to this thread and my website

It will happen, but a lot is going on right now so not able to work on it often or for long.

rose
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  #4  
Old 11-04-2006, 01:59 AM
Moyvore Moyvore is offline
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Default Diagnosis

Rose,

There have been an number of recent articles in the medical literature in effect endorsing your years of posts about B12 misdiagnosis:


Cobalamin-responsive disorders in the ambulatory care setting: unreliability of cobalamin, methylmalonic acid, and homocysteine testing.

Solomon LR. Department of Medicine, Yale University Health Services

http://intl.bloodjournal.org/cgi/content/full/105/3/978

(Full text, with link to free pdf file)

Editorial comment on Solomon, same journal:

Unreliability of current assays to detect cobalamin deficiency: "nothing gold can stay"

http://www.bloodjournal.org/cgi/content/full/105/3/910

Responses and rejoinder:

To the editor:
Cobalamin-responsive disorders and unreliability of cobalamin, methylmalonic acid, and homocysteine testing

http://www.bloodjournal.org/cgi/content/full/106/3/1136


To the editor:
Is testing for clinical cobalamin deficiency truly unreliable?

http://www.bloodjournal.org/cgi/cont...l/106/3/1136-a


A subsequent UK confirmation:

Haematologica. 2006 Feb;91(2):231-4.

The limited value of methylmalonic acid, homocysteine and holotranscobalamin in the diagnosis of early B12 deficiency.

http://www.haematologica.org/journal/2006/910231.pdf

"The symptomatic effects of high dose B12 therapy
warrant further investigation in larger studies. Our findings
are in keeping with the recent report by Solomon
that the metabolite markers MMA and tHCY cannot be
regarded as the gold standards for assessing B12 deficiency."


There have been reports describing B12 deficiency with high serum B12 levels in immunological or kidney issues.

Eur Neurol. 2006;56(1):62-5.

Chronic renal failure promotes severe variant of vitamin B12 deficiency
(Letter, no abstract provided)

"The vitamin B 12 deficiency in patients with chronic renal insufficiency is however much more difficult to assess and poorly understood. There is evidence that patients with renal dysfunction might develop a vitamin B 12 resistance [10] . Here we report a foudroyant case of SCD [subacute combined degeneration] with severe affection of the white matter of the brain and spinal cord in a patient with chronic renal failure."

"The patient had been on vitamin B 12 supplementation for 2 years (1,000  g/month).


"In conclusion, severe SCD courses combined with epilepsy, cognitive decline and reduced vigilance, and normal levels of vitamin B 12 , homocysteine and MMA
should be considered in the spectrum of cobalamin-deficiency-associated neurological disorders, especially in patients with chronic renal failure. Such fulminant
courses of the disease might be related to a generalized resistance to vitamin B 12 in such patients and may require earlier and much larger therapeutic cobalamin doses than previously considered."

[10] was:

Nephron Clin Pract. 2005;99(2):c42-8. .

Cellular uptake of vitamin B12 in patients with chronic renal failure.

http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15637428

"...CONCLUSIONS: Our results show that vitamin B12 uptake is impaired in [mononuclear cells] from renal patients, with no evidence that the surface receptor is down-regulated. High serum concentrations of holoTC [holo-transcobalamin] are common in renal patients and might be related to a generalized resistance to this vitamin. Serum concentrations of vitamin B12 within the reference range are not likely to ensure vitamin delivery into the cells. Supraphysiological doses of vitamin B12 may be necessary to deliver a sufficient amount of the vitamins to the cells via mechanisms largely independent of holoTC receptor."


I wonder if you have noted any poster on this List with B12 issues (masked or not) has reported either a diminished sense of thirst (noted camel effect) and or sporatically (or constantly) elevated blood urea nitrogen levels (BUN). It turns out that diminished kidney function (which may be associated with reduced fluid intake) apparently can have a material influence on B12 serum to tissue transfer.


Moyvore
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  #5  
Old 11-04-2006, 04:36 PM
rose rose is offline
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Default Absolutely

In some cases homocysteine remains high even though plenty of B vitamins have been taken, including lots of B12. Definitely should look at kidneys in those cases.

And, to reinforce the kidney/B12 connection, for a very long time elevated methylmalonic acid has been known to indicate either low B12 or kidney problem.

So many interesting and important connections are being explored now. MS and B12 deficiency is another one.

rose
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  #6  
Old 11-04-2006, 04:41 PM
rose rose is offline
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Default Regarding thirst and BUN

I don't remember anyone mentioning diminished sense of thirst in connection with B12 deficiency. But, now that you mention it, I wonder whether there is sometimes a connection between lessened thirst in older people and the higher likelihood of B12 deficiency.

BUN. Looks like the attitude regarding BUN is a setup for missing cases of B12 deficiency. As you say, elevated BUN points to kidney problem, and usually low BUN (which can point to malnutrition) is not taken seriously.

Excellent observations.

rose
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Old 01-15-2007, 02:25 PM
annelb annelb is offline
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Default

Not only does this need to be bumped, I want to add an abstract. It is not a new one but the message still holds true.

http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=pubmed

Quote:
South Med J. 1991 Dec;84(12):1475-81. Links
Myths about vitamin B12 deficiency.Fine EJ, Soria ED.
Department of Neurology, School of Medicine, State University of New York, Buffalo.

Neurologic manifestations of vitamin B12 deficiency are protean, including neuropathy, depression, and dementia. We present evidence to dispel confounding myths about vitamin B12 deficiency. Hematologic indices are normal in up to 30% of patients with vitamin B12 deficiency, and results of the Schilling test may be normal in patients with symptoms of deficiency. Isolated neuropathy or myelopathy may occur independently, but often appear concurrently. The neuropathy is primarily axonal and predominantly sensory. Myelopathy is caused by demyelinated areas in posterior and lateral columns. After therapy, recovery from neuropathy is incomplete or may extend for several years. Vitamin B12 replacement should not be withheld from patients with borderline vitamin B12 levels, since the consequences of allowing myelopathy, neuropathy, dementia, and mental disorders to worsen clearly outweigh any disadvantage of therapy.

PMID: 1749982 [PubMed - indexed for MEDLINE]
Anne
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Old 01-15-2007, 09:11 PM
BrokenBladder BrokenBladder is offline
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Default

Thanks for all of the links posted!!! I'm new to all of this and feel a bit overwhelmed. My B-12 is low, I'm anemic(sp?), and I have low potassiam. I'm making an appointment with my PCP this week, but I don't know how helpful he will be. I seriously need some energy back!!
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Old 01-18-2007, 06:41 AM
Cry Tears Cry Tears is offline
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Default Hand raised!....

Rose...can I be your "poster child" for B12 deficiency?!?!!?
Its too bad my very first post from Sept 3, 2004 got lost.
The thread proved how true everything you've written is correct.
Dr's told me all my levels were NORMAL!...yes, but the standards are wrong!
A B 12 level of 232, loss of balance, burning lips, extreme fatigue, mental confusion, Peripheral Neuropathy, severe muscle weakness, muscle twitching and spinal cord pain is NOT normal!
My moderate level sock glove pattern of Peripheral Neuropathy
documented by OHSU teaching hospital.....with that low level of B12 should speak volumes!
NORMAL LEVEL? I think NOT!

I began taking the Methlycobalamin Sept 3, 2004....I was near death then.
Within 10 days I was able to get out of bed after being totally bedridden half a year....
finally I could take my own shower unassisted!

By mid October, I kept the Mayo Clinic appointment made 6 months earlier.
I was doing so well I was able to travel there all by myself!
2 weeks of their thorough testings, they agree'd my symptoms most likely were from B12 deficiency.
I paid how much to learn this? Hhhhhmmmmm! Where's the OMG sticker when you need one?!

My EMG and NC test were then back to NORMAL....B12 level....800+
Most of those horrible symptoms began abating!
My walker sits in my garage....a testament to what's written here on BT
and that Rose is a Godsend to many who are suffering....needlessly!
If only more could find this web site...I pray, pray, pray!

I thank the LORD every single day that I was able to find this web site
and for Rose. She anwered my final plee for help.
God Bless you Rose...and those who support her endeavors!
Cheryl
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Well behaved women never make history! Cry & you cry alone...laugh & at my age you'll wet your panties!Some days seem harder than others, you feel can't take another day. Next day brings glorious dawn, dark clouds parted, life's worth living! Looking foward to THE ulitimate glorious day! His own hand shall wipe away our tears, no more pain, sufferering, sadness.
My struggles 24/7: PAIN! Crohns, Fibromyalgia, Hashi-motos, AVM, Peripheral Neuropathy, Rosacia & 3 hangnails, lol!

Last edited by Cry Tears; 01-18-2007 at 07:02 AM.
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  #10  
Old 01-21-2007, 06:18 PM
rose rose is offline
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Default

Good idea, Cheryl. We'll have a very large poster made, and many of us will be on it. Thanks again for the support!

Anne. As far as I'm concerned, that cannot be quoted too often. Thanks for bringing it back up.

As for our newer B12 recruit , you may be lucky to be anemic. Unfortunately, people who do not become anemic, even with severe longstanding damage, are much less likely to be diagnosed.

rose
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