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Vitamin B12 deficiency is commonly misdiagnosed.

Posted In: Medical Stories 17082 Replies
  • Posted By: Anonymous
  • February 17, 2007
  • 00:51 AM

I diagnosed myself at the age of 21 with vitamin B12 deficiency. The only sign I had was enlarged red blood cells, no anemia. I am now 43 and have been an ER R.N. for 20 years and have also been researching vitamin B12 deficiency and pernicious anemia for 20 years. I frequently encounter patients who have signs and symptoms or are at high-risk for B12 deficiency, but doctors do not test. The one's that rarely do--- are not ordering a more sensitive test than the serum B12 test. All patients should always have a methylmalonic acid test, along with serum B12 (to aid in diagnosis). Out of frustration, witnessing patients who needed to be tested, and teaching doctors how to diagnose B12 deficiency, I co-authored the book, "Could It Be B12? An Epidemic of Misdiangoses," Quill Driver Books, 2005. 12 reviews on Amazon.com (3 from physicians). Many disorders or diseases don't have a treatment--- but B12 deficiency does. It is criminal for patients to sustain neurologic injury or permanent disability because health care professionals are not educated properly on B12 deficiency. This is a totally preventable and treatable disorder. My mission is to get a standard of care change in the early diagnosis of B12 deficiency to prevent poor health, injury, disability, poor outcomes and even death. Major malpractice cases have been won by patients who are permanently injured.
All seniors who fall should always have B12 deficiency ruled out with methylmalonic acid testing. B12 deficiency can cause gait and balance problems, tremor, orthostatic hypotension, parasthesias, confusion, dementia--- which makes a patient high risk for falling----- yet there is no standard of care to check seniors for B12 deficiency when they present with a fall. This is currently a project I am working on. I have seen many patients who have fractured their hip or femur--- who proved to have true B12 deficiency. We are wasting billions of dollars and more importantly affecting millions of lives being ignorant regarding this disorder.
Recent article I wrote for "Nursing 2007" January issue regarding B12 deficiency and the elderly. In addition, anyone with beginning dementia or with a diagnosis of dementia needs proper screening to rule out B12 deficiency. There is a critical window of opportunity to treat B12 deficiency or permanent injury will result.

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  • To Tenngal71: It is interesting that your husband is a veteran (39 years old) and has a B12 deficiency. Aprrox 6-8 weeks ago, CNN was reporting the poor care/conditions at VA hospitals--- one woman was giving testimony-- and all the signs and symptoms she was reporting sounded like B12 deficiency---and all these veterans (coming back from Iraq) need to have B12 deficiency ruled out (they shouldn't assume that any of their mental or neuro signs or symptoms are just post-traumatic stress disorder or are psychological--- they could also have a true medical problem causing their symptoms. This really peeked my interest further, because I was contacted by the Ireland Medical Journal to do a Q and A for their journal regarding B12 deficiency. There is a physican researcher in Ireland who believes that they are seeing more B12 deficiency cases because of the environment---(we already know that cyanide, mercury--- binds with B12---therefore using it up--- and can cause deficiency or exacerbate an existing deficiency) so one just wonders the chemical warfare that potentially could be used in our present war---- makes all the more reason why vetrens could be at higher risk for B12 deficiency. All veterns who are symptomatic need B12 deficiency ruled out. If they have received nitrous oxide (laughing gas) this destroys B12 in the body. (they could get this for skin grafts, surgeries from injuries received in war, and any dental work). In addition, they are more than likely not eating a diet full of B12 (meat, eggs, milk, cheese)--- and the amount of B12 in food or a basic vitamin supplements is not enough. Your husband who was diagnosed with B12 deficiency should have received a series of B12 injections--- to rebuild his stores. 1,000 mcg IM every day x 7 days1,000 mcg IM every week, x 4 weeks1,000 mcg Im every 4 weeks for maintenance He could take a methyl-B12 5,000 mcg lozenge daily inbetween injections.If he only received one shot--- and then had to wait another month for the next shot---- this is not enough. If the VA is missing injections because they did not order it--- that is absurd---- this is a serious condition, and must be treated properly!Don't let his doctor underdose him or treat him miserly with vitamin B12. His staff can teach you how to give the injections. Once he receives an injection, it typically makes his blood work look fine and his B12 level high enough--- which discourages many doctors to continue proper treatment. You don't monitor B12 deficiency by seeing what the serum B12 level is. Once your husband was identified with B12 def. , he needed the series, and continued treatment for life. His doctors should investigate why he was B12 deficient to begin with. To monitor his B12 status a test called methylmalonic acid is a more sensitive screening tool, if elevated indicates B12 deficiency at the tissue and cellular level. If you know of someone reliable in the government to address B12 deficiency in veterans, (that I could contact) to promote proper testing and treatment, please let me know.An interesting site you may want to visit is www.B12.com B12 deficiency attacks numerous body systems (neurologic, hematologic , immunologic , vascular, gastrointestinal, musculoskeletal, and genitourinary), so the signs are symptoms are many--- but everyone is different on how they present-- and they can predominate in one system.Typically B12 deficiency strikes the neuro system and people exhibit neuropsychiatric manifestations. So anyone with neuro or psych signs and symptoms must be tested for B12 deficiency:---paresthesias (numbness or tingling to extremities)---dizziness---balance problems---gait problems---clumsiness (incoordination)---frequent falling---tremor---muscle spasticity---visual problems---impaired fine mortor coordination---nocturnal cramping in arms and legs (like restless leg syndrome)---bladder-bowel incontinence (advanced--when B12 def. has been undiagnosed or misdiagnosed for an extended period of time) psych problems---depression---apathy---irritability---poor memory, memory loss, cloudy thinking---confusion, disorientation---dementia---paranoia---delusions---violent behavior---suicidal ideations---hallucinations---psychosis Other common signs and symptoms---fatigue---weakness---falls---pallor---anemia (but you do not have to have--- which fools doctors---sore tongue---weight loss There are more signs and symptoms--- but B12 deficiency attacks the myelin and is a demyelinating disorder---- similar to multiple sclerosis. That is why there are so many neuro signs and symptoms. If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury. This is what we are trying to prevent--- disability, poor health, and even death (from misdiagnosis). B12 deficiency is serious---- in the late 19th century and early 20th century people died from B12 deficiency---(for their was no cure back then), eventually became anemic--- and they called it pernicious (deadly) anemia. Can learn more from our book, "Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, 2005. 13 reviews on Amazon.com
    Anonymous 42789 Replies Flag this Response
  • Question for Sally:- If your B12 level is higher in blood , dioes it effect anything if you are taking injection also?. Or higher B12 should not really impact anything at all ?. Any side effects of higher B12 level in blood although MMA still high ? I have ordered your book and i should have it by Next Monday. If MMA is high--- you still have a B12 deficiency. The serum B12 level is not a good way to monitor your B12 status after you start taking B12 injections or high dose oral B12. There is no problem with having high serum B12 levels (this is to be expected after injectionsor oral/lozenges)----the serum B12 test (after treatment) may look good on paper (from test results) but does not reflect what is getting to the nervous system. So it is irrelevant what the serum B12 is after treatment. If someone stopped taking B12 for years--- then a serum B12 would be of interest and should be ordered---- also should be ordered in the beginning when B12 deficiency is suspected--- along with the methylmalonic acid test and homocysteine.
    Anonymous 42789 Replies Flag this Response
  • I posted my story earlier in the thread, but I have a question - what's the best kind of doctor to see to get a B12 deficiency diagnosis? Family doctor, neuro, gastroenterologist, endocrinologist? Should I expect my family doctor know much about it? I see him on Monday for follow-up on something else and I'd like to bring this up with him, but I don't know if he'll have much of a clue. I don't know if I should talk to him about it or go back to see the neurologist that I saw (he was the one who tested my B12 and said it was fine). Sally - I did buy your book and went through the scorecard section where you add up points for your symptoms. I had 8 points and could have probably added a few more as it was sort of borderline on a few answers, so I didn't count them.---------------------------------------------------------------------Neurologists and gastroenterologists should know about B12 deficiency as well as internists and general practitioners. If you have neuro signs and symptoms I would seek treatment from the neurologist. However, you need to find a doctor that is knowledgable about B12 (and many are not, this is why we wrote the book) and also one that will work with you. Your neurologist stated your B12 was fine, but did he do the MMA test? He should know all about MMA.
    Anonymous 42789 Replies Flag this Response
  • Reply to Sally:-I just got my test results , My MMA is 0.16umol/l and Intrinisic factor blocking Ab is Negative . I had one B12 injection done 18 hours before perform any blood test . Do you think that can bring down MMA level ?. Now i don't have AB for Intrinisic factor what other things i should be looking at it . Should i continue taking B12 injections ?. Thanks for all your help , i will have your book this week , it on mail.
    Anonymous 42789 Replies Flag this Response
  • Hi Sally, I am 30 year old women leaving in the UK & have been feeling pretty ill for about 3 months (with muscle aches, mild tremors, slight unbalance when walking, vision blurriness - with new floaters I have never had before, extreme fatigue, sore tongue, small white patches on skin). Although I have been having dizzy spells for about six months in total.I have had lots of blood work done by my doctor (which all came back fine) except for a low b12 of 162 (pg/ml) and fairly low / normal folic acid levels and was referred to a haemotologist. The haemotolgist said that I have good blood and should begin B12 injections as soon as possible & if the injections don't start clearing up my neurological symptoms within 6 weeks I should go to a Neurologist - she also gave me another B12 serum blood test (which came back 315 pg/ml - although I had taken some oral B12)I have had 5 B12 injections (1,000mcg hydroxocobalin) and am slowly starting to feel better and have 6 more planned, My energy levels have definately risen and I am definately not so achy. Although I am still having a slight difficultly with feeling off balance when I walk and blurry vision. I have ordered Jarrow 5,000mcg Methocobalin that I will take daily when not having my injections.My question is how long do you think the B12 supplements may take to work? And also is it to late for me to have MMA tests / HCY tests now that I have started taking supplements? Also, Would you recommend the Schilling test to determine the cause of my difficiency?Thanks, Kate
    Anonymous 42789 Replies Flag this Response
  • Sally, can you tell me if V-B12 definiency actually causes changes to the brain? Would you ever see something on an MRI? I'm trying to interpret a report I just recieved and don't want to make wrong assumptions. I do have appointment with neurologist but am having a hard time waiting to figure this out.
    Anonymous 42789 Replies Flag this Response
  • If you get a B12 injection it will bring down the MMA quickly----so having a MMA test after an injection is pointless and a waste of money. If your serum B12 was low---- then you need to take injections or high dose B12 lozenges. You don't necessarily have to have a + IF antibody to have pernicious anemia (could only have a parietal cell antibody) and elevated gastrin. You will have to do a trial of B12 and see if your symptoms improve. What we are trying to educate the public and health care providers, is that when one has signs or symptoms of B12 deficiency, the doctor should test for B12 deficiency by running B12, MMA, and homocysteine together as a series. Some people have low B12 and normal MMA---- and if symptomatic (and they would be --- otherwise your doctor wouldn't be running the tests) then they deserve a trial of B12 therapy. The MMA test is not the end all test--- some things can cause a false negative. According to Dr. Eric Norman the urine MMA is 40 x's more sensitive than the serum MMA. But I have seen people with B12 level in the low 200's, MMA normal and they respond to B12 therapy. I don't believe the MMA test is the end all test (but it is extremely helpful in many cases). The reason why you want to do the MMA test--- is because there are many people who have B12 in the mid 200's , 300's, 400's--- and their MMA is elevated ---indicating a deficiency--- we don't want to miss those people. Some people have a transcobalamin II deficiency. The clinician needs to look at the patient's signs and symptoms, get a good history--- finding out if the patient received a B12 shot recently or started taking B12 on their own--- for this will sway results. There are many variables one needs to look at. Your doctor also needs to look at risk factors making some people more prone to B12 deficiency, and if you are found to be B12 deficient--- why you are B12 deficient (ie. diet, malabsorption problem, autoimmune disorder, eating disorder, drugs (proton-pump inhibitors, nitrous oxide) alcoholism, lack of stomach acid, etc.) But please remember--- all people reading this site---- the serum B12 and MMA test is before treatment is begun.
    Anonymous 42789 Replies Flag this Response
  • Reply to Sally:->>>>If you get a B12 injection it will bring down the MMA quickly----so having a MMA test after an injection is pointless and a waste of money.If your serum B12 was low---- then you need to take injections or high dose B12 lozenges. You don't necessarily have to have a + IF antibody to have pernicious anemia (could only have a parietal cell antibody) and elevated gastrin.>>>What you comment above that means if your serum B12 level is low than i need to take either injection or Lozenges . In my current test my b12 is above normal and MMA drop down as well that could be because of one B12 injection 18 hours prior to perform test . Which means that one injection dropped MMA level , so should i continue taking B12 injection the way you are directed in earlier responses .By the way i got Hydroxycobolomin injection yestarday after long run around from multiple vendors and pharmacies. Can it be possible the symptoms i have are due to Hyperthyroidism as my TSH dropped down to .002 in my last test , i initially Hypothyroidism due to autoimmune disorder but due to too much Levoxyl/Cytomel i became Hyper.
    Anonymous 42789 Replies Flag this Response
  • Sally, I have ordered your book and will receive it tomorrow. I would like your input to my situation if you have a moment. I am also an RN, a 40 year old female in great shape and with no prior health issues. In January I began tingling in my fingers and hands which within a few days spread to my toes and legs. I also began having "hot boiling water" pouring down my leg feelings, hot electric shocks, tremor in my hands and arms, and walking "felt weird" in my right leg. I have also had burning skin feelings in my trunk, tingling in my scalp and tingling on the tip of my tounge. Prior to all of this I had been taking tagamet left and right for a persisting gerd problem ( I know better than that, being an RN but figured it was stress and too much caffiene causing the gastric upset.) I then took a 2 week course of prilosec. The day after I finished the prilosec, the symptoms started. I began taking B supplement for the week prior to MD visit to see if it would help my symptoms. My inital blood work was "normal" with a low normal B-12 of 301 (211-900). My Hgb and Hct were normal so doctor said B-12 irrelevant. (That was the B-12 level after one week of B-supplement. MMA and homosystien not drawn then. Was refered to neuro. Brain MRi and C and T spine MRI with contrast, normal, no lesions. Lumbar puncture normal. He gave me a B-12 shot to placate me and I started taking 2000mcg B-12 oral on my own.Neuro said it was "viral" and sent me home with xanax. Changed Neuro doctor and the second one looked at that inital B-12 level of 301 and reordered b-12 level (now six weeks later) and MMA and homosystein. B-12 level 1300 and MMA and Homosystein normal. Said no way it is B-12 def. EMG and NCS normal. He doesn't know whats wrong with me. He placed me on Lyrica 50mg TID and Mentanex (high b-12 ,folate , and b 6) and I am to repeat MRI's in 2 weeks (3 months now after symptoms started) if no change. I still have symptoms every day. I am having more "better" days, but have not had a day with no symptoms. I am still 2 or 3 times a week having a bad day. I have been emotionally crazy and anxious since this all began...not my normal Type A-In-Control type woman. My question is: do you think it possible to have self-induced a B-12 defciency with abuse of the Tagamet and Prilosec and then covered my tracks by supplementing. How long does the MMA and Homosystein stay elevated after you begin therapy? Would I be better off with the shots instead of Mentanex? I cannot for the life of me figure out anything else that preceded these symptoms except for gastric upset. (Which I am still having and waiting to see gastro doc). Also, with the initiation of these symptoms I lost 7 pounds and have had gastric slowing and constipation and had 5 weeks of night sweats (autonomic involvement?) Bottom line.....How long does it take to repair damage if B-12 def is the reason this chain of events began? Thank you so much in advance for your time. I can't wait to read your book.Angela
    Anonymous 42789 Replies Flag this Response
  • Sally, I just have to ask: are you familiar with NAET? I am wondering if so, what your thoughts are on it as it relates to B12 deficiency, or more accurately, B12 malabsorption. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Sally, I just have to ask: are you familiar with NAET? I am wondering if so, what your thoughts are on it as it relates to B12 deficiency, or more accurately, B12 malabsorption. Best wishesDOM No I am not familar with NAET--- just googled it--- and it talks about food allergies causing illness. Yes, this can happen---- similarly to how wheat (gluten) causes celiac disease by destroying the lining of the small intestine--- which causes numerous nutritional deficiencies (such as B12 deficiency and iron deficiency). So yes, it would not be outrageous for a person to have an unknown food allergy that destroys the lining of the stomach causing atrophic gastritis----- funny you should mention this--- I wrote a 66 page paper for Wayne State University in 1988--- describing how this might be plausible--- titled: "Effect of Unknown Food Antigens Causing Atrophic Gastritis and Pernicious Anemia: Presently misconstrued as autoimmunity." My hypothesis was: Is the medical community confusing autoimmunity with hidden food allergies? Are many cases of pernicious anemia falsely labeled as an autoimmune disease, but actually are caused by manifestations of a chronic allergic immune response, which over time leads to atrophic gastritis, and susequently perncious anemia? Thus specific food antigen(s) could be the pathogenesis of numerous disease processes. The reason I began to ponder this was I have juvenile pernicous anemia-- at the age of 21 diagnosed--- probably had it in my late teens, and I have suffered from chronic allergies my entire life--- so to me it seemed plausible, so I studied each in depth, perncious anemia, B12 deficiency, chronic atrophic gastritis, food allergies and the immune response, celiac disease, autoimmunity, the immune system--- and then showed how all were interrelated---- it was the beginning of my research and study regarding B12 deficiency. To prove it---- you would have to have people who have chronic atrophic gastritis---- which the stomach's glands rejuvenate, parietal cells become functional again,and normal acid secretion takes place, and then B12 deficiency would not result. But there are no studies like this that I know of---- the individual person would have to figure out what they are allergic to and never consume it--- and show rejuvenation of the stomach lining. This would parallel to celiac disease--- in that once the offender (gluten) is removed the body heals itself and the lining rejuvenates.Too bad we don't have any data regarding this--- or maybe this is not the case in this disease process.
    Anonymous 42789 Replies Flag this Response
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  • Thank You Sally for the info on B-12....my husband has almost all of the symtoms including weight loss...he has went from 178 to 152 (give or take) in the last year or so....he is tired all the time..before he went to Iraq he was a very healthy man....ran almost everyday with his ruck sack on his back....took no meds....but he was injured over there that required surgery....and then came the meds...including anti-psycotic meds...(VERY SCARY STUFF) he had so many episodes...on this crap....in a out of the psyc unit...until i had it out with his doctors after him nearly going completly off on a stranger...the meds were making him crazy!..that's what i told the dr...and he kept him for about a month to take him off the mess he had put him on....that he didn't even need....it's really sad how they do these guys when they come back...instead of dealing with their nightmares they give them pills to cover up their feelings...but i think all it did was make him worse....now he is great....only takes a few muscle relaxers or pain meds every now and then when the pain is to much...the VA DOES NOT TAKE CARE OF OUR SOLDIERS..i will talk to the dr myself about the B-12 problems...:mad: I just want them to help him get better...he is a 39 year old who feels like he's 89...I also believe he was exposed to some chemical...he has had a weird rash since being back..(which was in 04)and he has been getting worse every since...he can barely work...but he has to because the VA won't compensate him for his medical problems enough...it's a shame how their treated...after all they do...they worry about the treatment ot animals better than our soldiers...believe me if i find someone that can do something...i will let you know..Thanks again..and if you can give me any more suggestions...please do!!!
    Tenngal71 22 Replies Flag this Response
  • My hypothesis was: Is the medical community confusing autoimmunity with hidden food allergies? Are many cases of pernicious anemia falsely labeled as an autoimmune disease, but actually are caused by manifestations of a chronic allergic immune response, which over time leads to atrophic gastritis, and susequently perncious anemia? Thus specific food antigen(s) could be the pathogenesis of numerous disease processes.Thanks for your response, Sally, and I think you are right on when it comes to this. There is just a huge increase in the diagnosis of autoimmune diseases today, but no one is getting to the CAUSE. I think Dr. Nambudripad has found this and her treatment, NAET, is revolutionary in its treatment of allergy and the immune response.Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Sally, I'm hoping that you can help me as I'm very troubled with the symptoms I've been having.I believe I have a b12 deficiency. My symptoms started about two weeks ago when I felt dizzy and felt some really bad vertigo. I sat down and ate and drank and felt fine. Now my dizziness, vertigo, difficulty concentrating, extreme weakness, tiredness, etc are nonstop. I went to a doctor and mentioned a possible deficiency to her after reafing this thread... she took 4 vials of blood and then told me I'm absoltely "healthy." She said I need to gain some weight and sent me home without any diagnosis.I must also mention that this is very scary for me because Ive been vegan for about 10 months and have NOT been taking b12 supplements. The only b12 I was getting was from my irregular usage of multivitamins and fortified soymilk.I have an appointment to see a different doctor on the 12th, but I'm scared of waiting that long. I want to request the uMMA test as well as more bloodwork. Do you think this will be possible for them to do? I'm afraid they will tell me that they don't know what the test is..Also, I wanted to start taking b12 supplements under my tongue, but I'm not sure if I should wait for the diagnosis first.If you could help me out I'd really appreciate it. I am completely freaked out after reading so much about b12 deficiency online. I want to fix this before it turns into something more serious than it already is.Thanks,Natalie
    Natalieee 1 Replies Flag this Response
  • Thank You Sally for the info on B-12....my husband has almost all of the symtoms including weight loss...he has went from 178 to 152 (give or take) in the last year or so....he is tired all the time..before he went to Iraq he was a very healthy man....ran almost everyday with his ruck sack on his back....took no meds....but he was injured over there that required surgery....and then came the meds...including anti-psycotic meds...(VERY SCARY STUFF) he had so many episodes...on this crap....in a out of the psyc unit...until i had it out with his doctors after him nearly going completly off on a stranger...the meds were making him crazy!..that's what i told the dr...and he kept him for about a month to take him off the mess he had put him on....that he didn't even need....it's really sad how they do these guys when they come back...instead of dealing with their nightmares they give them pills to cover up their feelings...but i think all it did was make him worse....now he is great....only takes a few muscle relaxers or pain meds every now and then when the pain is to much...the VA DOES NOT TAKE CARE OF OUR SOLDIERS..i will talk to the dr myself about the B-12 problems...:mad: I just want them to help him get better...he is a 39 year old who feels like he's 89...I also believe he was exposed to some chemical...he has had a weird rash since being back..(which was in 04)and he has been getting worse every since...he can barely work...but he has to because the VA won't compensate him for his medical problems enough...it's a shame how their treated...after all they do...they worry about the treatment ot animals better than our soldiers...believe me if i find someone that can do something...i will let you know..Thanks again..and if you can give me any more suggestions...please do!!! 1. Since your husband was diagnosed with severe B12 deficiency--- this was causing his psychiatric problems---- and it is an error to automatically place patients on psych meds and not rule out metabolic causes such as B12 deficiency--- but doctors not ruling out B12 deficiency when mental illness strikes is common, I see this poor practice all the time, and it drives me nuts. 2. Since your husband has a documented B12 deficiency and a weight loss (along with all the other signs and symptoms), he needs to have celiac disease ruled out. It can strike at any age--- and stress can bring it on (which obviously being in Iraq in the war is beyond stress). Celiac disease which is also called tropical sprue or gluten enteropathy is where the body cannot handle gluten (which is found in wheat) and it destroys the villi in the small intestine causing numerous nutritional deficiencies including B12 deficiency, iron deficiency, calcium deficiency, osteoporosis, poor bone density. Celiac people sometimes have a rash---- so your husband really needs this ruled out. His rash may be from some chemical warfare----but he still needs celiac disease ruled out.These are the basic tests they need to run:1. tissue transglutaminase IgA2. tissue transglutaminase IgG3. endomysial antibodies4. SGOT, SGPT, alk phos They need to see if he has an iron deficiency and need to order a ferritin and serum Fe, TIBC. Since your husband has a documented B12 deficiency---- he needs his stomach scoped (EGD)---- which they should biopsy to see if he has H. pylori (which can cause B12 deficiency) and can be treated with medication. He also needs to be biopsied to see if he has chronic atrophic gastritis (which is seen in autoimmune pernicious anemia) and a biopsy of the small intestine to see if he has celiac disease. So the EGD needs to be done for 4 different possibilities:1. Cancer2. celiac disease3. atrophic gastritis4. H. pylori (Because your husband has a weight loss and is still feeling poorly the EGD really needs to be done all the more-- for cancer and celiac disease can cause weight loss.) Did your husband get the series of injections to rebuild his stores? Once a month injection is not enough--- when a true deficiency is first identified. He will improve somewhat---- but not completely if his body's stores were not replenished and he is underdosed (especially because they keep forgetting to order his B12) (that is unacceptable!) They can prescribe you a 30ml vial of hydroxocobalamin and they can teach you how to give an injection to him and do this is the privacy of your own home. You must insist that these tests are done. You should photograph your husbands rash or lesions when they are prominent and keep a diary of his symptoms. He is doing better because of the B12--- but they need to identify why he was B12 deficient to begin with. If other soldiers are getting the same symptoms encourage them or their loved ones to have them tested for B12 deficiency using the serum B12 and MMA --- if either abnormal they need to be treated.One must remember, B12 deficiency is devastating and can destroy the myelin of the nervous system causing permanent neurologic injury and even death----- but the clinician still needs to find out why the B12 deficiency began to begin with. Just treating the deficiency without really knowing why--- is poor practice as well as dangerous---- because some other disease process may be going on which needs to be identified or treated (ie. celiac disease, H. pylori, cancer). I already discussed cyanide poisoning in chemical warfare in the previous post. You stated he got worse after surgery---- find out if he received the anesthetic nitrous oxide--- this exacerbates (worsens) a pre-existing B12 deficiency quickly. I will try to address testing soldiers for B12 deficiency (who are at risk, symptomatic, etc.) by writing the surgeon general again. Last year, I and Dr. Eric Norman wrote to the past and present surgeon general regarding misdiagnosed B12 deficiency in the public (especially how it affects the elderly) of course I never received a response, but maybe they will address the soldiers, it is the least we can do---- because B12 deficiency is treatable----our government (VA) will be wasting billions of dollars if they do not test and identify soldiers who are B12 deficient early by causing cognitive problems, dementia, injury, disability, poor health, as well as legitmate malpractice suits. More importantly they will be affecting tens of thousands of lives because of their ignorance and knowledge deficit of vitamin B12 deficiency. They at least need to study a group of soldiers who have your husbands symptoms--- he proved to be B12 deficient-- there must be others. Is it his own body that he was destined to get B12 deficiency---- or is there some toxin that is binding the B12 in our soldiers bodies creating a deficiency? Nitrous oxide could explain it (and you did say he became worse after surgery). (I have an entire chapter on nitrous oxide and B12 deficiency).
    Anonymous 42789 Replies Flag this Response
  • Sally, can you tell me if V-B12 definiency actually causes changes to the brain? Would you ever see something on an MRI? I'm trying to interpret a report I just recieved and don't want to make wrong assumptions. I do have appointment with neurologist but am having a hard time waiting to figure this out. Yes, B12 deficiency can cause lesions on a brain and spine MRI. If you google MRI and B12 deficiency you will get many hits with references in different medical journals--- and you can get the abstracts. Your neurologist should be familiar with this. Some articles showed reversal of the lesions after months-- to years of injectable therapy.
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  • Sally, I have ordered your book and will receive it tomorrow. I would like your input to my situation if you have a moment. I am also an RN, a 40 year old female in great shape and with no prior health issues. In January I began tingling in my fingers and hands which within a few days spread to my toes and legs. I also began having "hot boiling water" pouring down my leg feelings, hot electric shocks, tremor in my hands and arms, and walking "felt weird" in my right leg. I have also had burning skin feelings in my trunk, tingling in my scalp and tingling on the tip of my tounge. Prior to all of this I had been taking tagamet left and right for a persisting gerd problem ( I know better than that, being an RN but figured it was stress and too much caffiene causing the gastric upset.) I then took a 2 week course of prilosec. The day after I finished the prilosec, the symptoms started. I began taking B supplement for the week prior to MD visit to see if it would help my symptoms. My inital blood work was "normal" with a low normal B-12 of 301 (211-900). My Hgb and Hct were normal so doctor said B-12 irrelevant. (That was the B-12 level after one week of B-supplement. MMA and homosystien not drawn then. Was refered to neuro. Brain MRi and C and T spine MRI with contrast, normal, no lesions. Lumbar puncture normal. He gave me a B-12 shot to placate me and I started taking 2000mcg B-12 oral on my own.Neuro said it was "viral" and sent me home with xanax. Changed Neuro doctor and the second one looked at that inital B-12 level of 301 and reordered b-12 level (now six weeks later) and MMA and homosystein. B-12 level 1300 and MMA and Homosystein normal. Said no way it is B-12 def. EMG and NCS normal. He doesn't know whats wrong with me. He placed me on Lyrica 50mg TID and Mentanex (high b-12 ,folate , and b 6) and I am to repeat MRI's in 2 weeks (3 months now after symptoms started) if no change. I still have symptoms every day. I am having more "better" days, but have not had a day with no symptoms. I am still 2 or 3 times a week having a bad day. I have been emotionally crazy and anxious since this all began...not my normal Type A-In-Control type woman. My question is: do you think it possible to have self-induced a B-12 defciency with abuse of the Tagamet and Prilosec and then covered my tracks by supplementing. How long does the MMA and Homosystein stay elevated after you begin therapy? Would I be better off with the shots instead of Mentanex? I cannot for the life of me figure out anything else that preceded these symptoms except for gastric upset. (Which I am still having and waiting to see gastro doc). Also, with the initiation of these symptoms I lost 7 pounds and have had gastric slowing and constipation and had 5 weeks of night sweats (autonomic involvement?) Bottom line.....How long does it take to repair damage if B-12 def is the reason this chain of events began? Thank you so much in advance for your time. I can't wait to read your book.Angela The MMA and Hcy will come down after (1) B12 injection---- so those tests results are completely irrelevant now--- I can't believe they gave you an injection before doing the MMA! Then to test you after, and conclude that it is not B12 deficiency causing your symptoms (is one of the reasons we wrote the book!) You taking the B vitamins pre---serum B12 could have raised your serum B12 level---- (301pg/ml is still in the low range. We have seen many patients whose serum B12 was in the 300's whose MMA was elevated (no dehydration or renal insufficiency) which can slightly raise the serum MMA. Your doctor stating that because your Hgb/Hct and indices normal--- that it is not B12 deficiency couldn't be further from the truth! It has been known for at least a century that anemia and macrocytosis can be a late sign in B12 deficiency---- and that 1/3 of the people do not exhibit these signs--- and neurologic signs and symptoms are present. This was reported 100 years ago---- and then reported again in a large study in the New England Journal of Medicine in 1988 by Lindenbaum et al. that numerous medical literature reference. So the doctor who told you this---- is very misinformed and needs continuing education. Since they screwed up your tests--- and you have symptoms of B12 deficiency, and improved slightly taking the Metanx---- I strongly suggest the following: Get a Rx for hydroxocobalamin 30ml vial (1,000 mcg/ml) and do the series of injections--- 1ml Im q day x 7 days, then once a week for 4 weeks, and then once a month----see if it improves your symptoms. They should check your serum gastrin (fast for 12 hours) if elevated--- indicator of atrophic gastritis which is seen in autoimmune pernicious anemia. You need the intrinsic factor antibody, parietal cell antibody, thryoid tests, ferritin done. Yes, taking H-2 blockers or PPI's can induce B12 deficiency over time, but maybe you were beginning to get a B12 deficiency because of autoimmue pernicious anemia (PA). Since you have GERD----you need to see if you have gastroparesis which is common in PA which you would get GERD symptoms--- regardless--- you need an EGD--- and they should biopsy the stomach to see if you have chronic atrophic gastritis, biopsy the small intestine--- to see if you have celiac disease--- which can give you B12 deficiency and GERD symptoms. When they scope your stomach--- have them check the pH. It should be acidic (as you know)--- but the distal esophagus can have erosion (looking like it is from acid) but could be not from acid. The pH of my stomach is 8.0 (I do not produce hydrochloric acid) which goes with PA--- and my gastroenterologist--- told me I had acid reflux and erosion--- I told him it was impossible--- they tested the pH, and I was correct-- it was 8.0 not 3.0---- therefore--- I asked him if it looked like it was caused from acid reflux and he stated, "Yes". Which means, how many people are diagnosed with GERD--- which actually don't have stomach acid (which is common in the elderly or PA patients)--- and their doctors place them on GERD drugs---- exacerbating their B12 deficiency further. Yes, they have gastric reflux eroiding the lining of the stomach, but is it caused from acid? In 1995, there was a nurse (manager of a nursing unit in a local hospital) in a suburb of Chicago that at the age of 45 had all the signs and symptoms of B12 deficiency, she went to numerous doctors, they thought she was crazy, she began using a cane to walk, she was so weak and balance was off, where she would frequently fall. No one could figure out what was wrong with her. They accused her of being an alcoholic (when she didn't even drink)--- they more than likely falsely accused her of this because she was macrocytic--- which alcoholics get--- but so does B12 deficiency (in some people)--- anyway-- she deteroiated, further and further. She told her husband who was a police officer that she was going to die. She was anemic and received blood transfusions--- still couldn't figure out what was wrong. Foggy thinking, cognitive problems persisited and got worse. Finally, she developed a pulmonary embolism in her lung (from hyperhomocysteinemia-----caused by untreated B12 deficiency) and one doctor (pulmonologist) finally figured it out-----B12 deficiency! The problem is---- this woman was misdiagnosed chronically---- as a result--- she was in a wheel chair for some time after treatment---- to this day, she has major neurologic injury and cognitive problems. 10 years post ---- she is using lobster crutches to ambulate. She filed a malpractice suit--- suing 2 hosptials and 10 doctors------ all that failed her. She cannot work because she has major physical and mental handicaps. Her settlement was 3.1 million dollars----- no money in the world could ever compensate her or her family for her mental and physical handicaps. This is what B12 deficiency can do. She is 55 now. The injections work better in many people----- I would absolutely try the injections. The hydroxocoblamain Rx needs to be DAW. Another post way back I wrote the NDC# etc. company where to get if pharmacy has difficulty getting. Once you read the book, you will understand completely what is going on ---- and how this treatable, curable disorder is commonly overlooked and causing great injury, and how doctors have a MAJOR KNOWLEDGE DEFICIT. The most vulnerable are the elderly--- people over the age of 60--- who their doctors assume their numerous complaints (that could be B12) are caused by other disease processes and chronic conditions. All we ask is that people who are symptomatic or high risk be properly tested and screen them (BEFORE B12 STARTED). Gastric slowing and constipation are common with PA and low or no stomach acid---- but you need your thyroid tested too. Night sweats and losing weight could be thyroid--- but could be a host of other problems, even hormonal. But being constipated and losing weight---- need to have EGD and colonoscopy. Sally
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  • Hi Sally, I am 30 year old women leaving in the UK & have been feeling pretty ill for about 3 months (with muscle aches, mild tremors, slight unbalance when walking, vision blurriness - with new floaters I have never had before, extreme fatigue, sore tongue, small white patches on skin). Although I have been having dizzy spells for about six months in total. I have had lots of blood work done by my doctor (which all came back fine) except for a low b12 of 162 (pg/ml) and fairly low / normal folic acid levels and was referred to a haemotologist. The haemotolgist said that I have good blood and should begin B12 injections as soon as possible & if the injections don't start clearing up my neurological symptoms within 6 weeks I should go to a Neurologist - she also gave me another B12 serum blood test (which came back 315 pg/ml - although I had taken some oral B12) I have had 5 B12 injections (1,000mcg hydroxocobalin) and am slowly starting to feel better and have 6 more planned, My energy levels have definately risen and I am definately not so achy. Although I am still having a slight difficultly with feeling off balance when I walk and blurry vision. I have ordered Jarrow 5,000mcg Methocobalin that I will take daily when not having my injections. My question is how long do you think the B12 supplements may take to work? And also is it to late for me to have MMA tests / HCY tests now that I have started taking supplements? Also, Would you recommend the Schilling test to determine the cause of my difficiency? Thanks, Kate Hi Kate,Yes, it is too late to have the MMA and Hcy tests, but you obviously have a B12 deficiency. You are very symptomatic and have a documented low B12. The MMA test is to help people who have normal serum B12 levels but are symptomatic--- so in your case it is not neccessary. It is an adjunctive test to aid in diagnosis, and we typically reccommend having all 3 at once (before therapy)---- but in your case, no problem. I am pleased that your doctor is giving you hydroxocobalamin injections and has given you the series. (Just make sure he/she is giving you 1,000 mcg in every injection verses 100mcg)----this is important. I think the injections are better than the lozenges (ESPECIALLY IF YOU HAVE NEUROLOGIC SIGNS OR SYMPTOMS)---and you do. I still would take the methyl-B12 lozenges between injections---- but you may need to continue frequent injections for the next 6 months (every 3 days or at least once a week)---- trying to recover whatever injury you have.Yes, you could have a Schillings test--- but it is not necessary. You should have antibody tests for pernicous anemia (PA) , and a serum gastrin. You should get thryoid tests and ferritin to check out your iron stores. It takes about 6 months to a year from the time B12 treatment was started to see what recovery you get or what injury has taken place. After your 6 weeks of treatment--- yes see the neurologist ----it sounds like you are on the every week shot now----- again, you need to get these injections every week or even every 3 days to try to repair as much injury as possible. At about 6 months you will have a good idea of where you will be at---- hopefully all or most of your symptoms will resolve. It sounds like this has been going on for some time--- because you mentioned you had dizziness for about 6 months--- and dizziness is one of the symptoms of B12 deficiency. Your B12 deficiency may be from an autoimmune disorder (PA) and because you have white patches on your skin--- show them to your doctor--- this may be vitiligo which is an autoimmune disorder--- highly related to pernicous anemia (PA). This will direct your doctor to check you for other autoimmune disorders (such as thyroid-- Hashimoto's thyroiditis, Graves disease). Your doctors will have to figure out why you had a B12 deficiency to begin with: diet, eating disorder, malabsorption syndrome (celiac disease, Crohn's, bacterial overgrowth) H. pylori, drugs (proton-pump inhibitors, H-2 blockers, chronic antacid use) nitrous oxide, autoimmune disorder (pernicious anemia), etc.) B12 deficiency is a very slow, insidious process that does not happen over night or over weeks or months---- your body is gradually depleted--- and then you begin having symptoms. This is why when people have any of the signs and symptoms of B12 deficiency--- their doctors should readily test them---- because we are trying to prevent permanent neurologic injury and disability. I wish you well--- and keep me posted of your recovery! Sally
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  • Sally, I'm hoping that you can help me as I'm very troubled with the symptoms I've been having. I believe I have a b12 deficiency. My symptoms started about two weeks ago when I felt dizzy and felt some really bad vertigo. I sat down and ate and drank and felt fine. Now my dizziness, vertigo, difficulty concentrating, extreme weakness, tiredness, etc are nonstop. I went to a doctor and mentioned a possible deficiency to her after reafing this thread... she took 4 vials of blood and then told me I'm absoltely "healthy." She said I need to gain some weight and sent me home without any diagnosis. I must also mention that this is very scary for me because Ive been vegan for about 10 months and have NOT been taking b12 supplements. The only b12 I was getting was from my irregular usage of multivitamins and fortified soymilk. I have an appointment to see a different doctor on the 12th, but I'm scared of waiting that long. I want to request the uMMA test as well as more bloodwork. Do you think this will be possible for them to do? I'm afraid they will tell me that they don't know what the test is.. Also, I wanted to start taking b12 supplements under my tongue, but I'm not sure if I should wait for the diagnosis first. If you could help me out I'd really appreciate it. I am completely freaked out after reading so much about b12 deficiency online. I want to fix this before it turns into something more serious than it already is. Thanks,Natalie Hi Natalie,If your doctor doesn't know what the methylmalonic acid test is ---- you could always print out what it is from Dr. Eric Norman's website www.b12.com which is very informative. He also will test your urine without a doctor's prescription---- but then the insurance company won't pay for it. I believe it costs $80.00 now to do the test.If you start taking the B12 lozenges--- you will alter the tests--- and then it clouds the diagnosis for your doctor.It any event--- being a vegan you will not get enough B12 if you do not supplement it with high dose supplements. 10 months doesn't sound long enough to become B12 deficient----BUT, it depends on where your B12 stores were to begin with, your medical history, other risk factors, etc. So you could be B12 deficient--- and need proper testing. A woman from the U.K. recently wrote and she had dizziness for 6 months and was found to be B12 deficient. When your doctor took the 4 vials of blood and told you that you were healthy--probably because you were not anemic or macrocytic----but you don't have to have either of these for B12 deficiency. Ask the doctor that took your blood if he/she did a serum B12? You still need the MMA either serum or urine. Sally
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  • Dear Sally - I had written to you previously. I am the 66 year old woman with so many diagnoses and complaints over the years. As you suggested, I told my doctor about B12 shots, and he gave me one double shot, then I was going every week for a shot - do not know what type of B12. Felt better emotionally after first few shots, but with third shot, the depression did not disapate - but I continued to get shots. So far have had 4 shots - tried to talk to my doctor about other tests, but he says he only gives the shots, then later on checks to see if the B12 levels become normal. Very frustrating. Have appt. with him in a few days and will try again. Bought 3 of your books, gave one to a friend of mine with all you symptoms, and another friend who is exhibiting signs of what the doctors call early Altzheimer's. Told them to check with their doctors - if I cannot get help, maybe they can. Am pursuing my parathyroid problems and thyroid problems now - can only hope the combination will finally help me. I cannot take much more. It is very frustrating to go to doctors who are supposedly well informed, and just be given slip after slip of prescriptions, all of which have side effects, and no answers. Hoping I get some answers. Living in the NYC area should be a help, but it isn't. Once again, thanks for your help and interest, and thank you for your book. I knowthat it will make a huge difference in a lot of lives. I am suggesting to all my friends and family that they request the tests you suggest from their doctors, so there is a baseline, and not, like me, too late because I already had the shots.You are a very empathetic and knowledgeable woman and I am glad I was awake one night at 5:00 AM and found this site.Erni
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