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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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  • thanks for the reply! I'll get the book from Amazon today. My neurologist already checked for celiac sprue antibody and I was negative. I have had lots of blood tests, the only abnormality was elevated MMA and MCV (blood cell volume.) I have been getting 1000 Mg every 3 weeks since November. Within 20 minutes of getting them, I'm much better, but the symptoms come back within 24 days and back to previous level within 3 days. So, I added the 2000 mg daily of my own volition. My Ferritin level is normal, no iron issues. Homocysteine was just checked, also okay. I have tried to get my primary to give me shots more frequently and I have gotten an emphatic NO. Getting my next shot on monday (cycanocobalimine, not what you mentioned) and meet with my neuro again on the 19th to review my recent blood results. I'll share with him your regimen for shots and see if he'll overrride my primary. The repair process is a little scary. Seems like everything gets worse, or different. Instead of twitching in a spot, there's numbness, instead of tingling, there's pain. The good news is that since December, I have not had any new symptoms, so the damage seems to have leveled off. thanks so much for your reply. Meg
    Anonymous 42789 Replies Flag this Response
  • I am looking for any advice or people with similar symptoms. I am 32 years old. I began taking prenatal vitamins about 3 years ago as I was planning to get pregnant. I got pregnant very easily, miscarried, then got pregnant immediately again. At about 20 weeks into my pregnancy, I began to experience L'Hermitte's sign. I didn't know what it was, I just thought it was some pregnancy weirdness. I also began to have severe anxiety and nocturnal panic attacks. I gave birth 5 weeks premature, not sure why. I am still nursing, my daughter is now 20 months old. I still take my prenatal vitamins. When my daughter was one year old, I began to have the L'hermitte's sign again and I had numbness and weakness that travelled all over my body. I had no pain. I also had a tight band sensation around my bra-line. These symptoms lasted a few weeks, then all disappeared except a funny glove like sensation in my hands. I had an MRI, there was a lesion in the C4 area, no brain lesions. The neurologist said I have a 20% likelihood of an MS diagnosis. She wasn't worried about my B12 because it was in the 400's. I am wondering if the high amounts of folic acid in my prenatal vitamins could be masking a b12 deficiency. I also have a history of floating stools and bloating/gassy stomach. My mother and grandmother have thyroid disease and my grandfather just died from pancreatic cancer. The neurologist wants me to get another MRI in a few months to check on the possibility of MS. I don't want to waste my money on the MRI, I would rather explore other causes. But, I don't know if I should get a second opinion or just go with the doctor who isn't worried about B12. Some days the sensations in my hands are worse than others. Some days my face will feel tingly and my tongue will feel tingly, but not always. I never really had any fatigue or pain. Any suggestions will be greatly appreciated.
    Anonymous 42789 Replies Flag this Response
  • I am in my thirties and recently diagnosed with B12 deficiency (180 on the B12 blood test). I am self injecting (by prescription) .1ml (100mcg) of Cyanocobalamin daily for the first five days, then once per month. My first question is that starting after the first injection (I've had 3 injections so far), I have been getting shooting pain from the top of my neck up the back of my head (a cramping sensation--bad headache.) This is happening several times per day, along with new leg cramps). Is this a common side effect of the injections, and if so, how long will it last? (I have an appointment with a general practitioner in a few weeks time--soonest they could see me; it was my neurologist who discovered the B12 deficiency and prescribed the injections.) My second question is if it is common for voids in the frontal white matter to show up on an MRI of the brain, in association with the B12 deficiency. (I was being tested for MS: problems with concentration/memory, loss of balance, pain & numbness w/ "pins& needles" in limbs, loss of feeling in tips of toes and fingers, etc.) My third quetion is how common is B12 deficiency in the late 30's age bracket? From what I have read, B12 deficiency is fairly common in people over 75 years of age, but I haven't read much about middle aged adults with B12 deficiency, and what might be the cause. As far as I know, I am not anemic and do not have any symptoms of tape worm.
    Anonymous 42789 Replies Flag this Response
  • hi, thank you so much. Your quick response really helped. She had a few more questions for you if you would'nt mind. she has been to three doctors who are not familiar with hydroxocobalamin, she finally convinced one to give it to her, but he said to only give 100mcg a week.It states in the drug insert the same thing, she is afraid to take more. Does the dose differ from the cyanocobalamin? She feels totally on her own treating this, she has also been dismissed by a neurologist he said that her b12 is not that low at 217. And should not cause these symptoms. Sever aching in legs-leg cramping-numbness in calf and muscle weakness. she would also like to know how long does it take for mental impairment_i.e.- depression,brain fog , inability to think clearly resolve? The doctors have been dismissing her telling her she just needs one injection a week for 4 weeks and one monthly.She thinks she is going crazy,and the keep telling her she just has depression,and one doctor said cronic fatigue syndrom. She is suffering so badly things just keep getting worse. We live in lombard ill. would you be able to suggest a doctor who knows what he is talking about. She has been sick for a year! You are so kind to put all this information out, people need to know about this. And even more so doctors need to be informed. And to all the other people, don't give up your not crazy.Thank you!
    Anonymous 42789 Replies Flag this Response
  • Bear with me, this is going to be a book! I’ve been on a wild medical ride over the last 4 months, have lots of bills now and still no answers. One day I started feeling this awful pain and pressure sensation in my upper abdomen, under my ribs, like someone had punched me in the stomach. For several days, I had no appetite. I finally broke down and went to the doctor. He ordered an upper GI x-ray and a gallbladder ultrasound. My gallbladder was normal, but my upper GI showed that I had acid reflux disease (not a surprise to me since I’d been nursing it with over the counter medications for years.) The doctor started me on prescription medicine to treat the reflux and I hoped the pain would go away. It hasn’t yet after 4 months. In the meantime (within a week of my stomach problems starting) I started having numbness and tingling in my arms and legs, especially on my left side. Even my face would feel numb sometimes. I tried explaining this to the doctor. He diagnosed me with sciatica, which I did have (also was nursing that along with OTC meds), which resolved after a course of anti-inflammatory meds. But all that while, the numbness didn’t go away. And I kept feeling tired all the time. Finally last month, I made another appointment and tried to get across my point to the doc – hey, these things all started at the same time, isn’t there a good possibility they’re related? He sent me for an abdominal and pelvic CT and a bunch of labwork, including a CBC, metabolic panel, liver panel, cholesterol test, thyroid tests, the works. Everything came back normal. He referred me to a neurologist. The neurologist went through the usual neuro exam. Sent me for an MRI and somatosensory evoked potential test, then a nerve conduction study. The MRI was normal, and nerve tests were normal. He even ran a B12 level, which he told me came back normal. He said my problems are probably just nerve inflammation and it may just take time for it to resolve on its own – call him in 3 months if it’s not better. So here I am, now stuck trying to figure things out on my own because I KNOW my body is not right, I just can’t get any medical tests to prove it. I’m only 28 and feel like my body is falling apart. In addition to the above, I’ve had other symptoms less frequently that I didn’t bother to mention to the doctors because they just didn’t seem important at the time. I’ve been having occasional muscle twitches – tiny little flutters kind of like an eye twitch – anywhere in my body, but mostly in the legs. Also, back when I first started feeling sick in November 2006, I think I experienced Lhermitte’s sign several times – a shock-like sensation when I would tip my head a certain way. At the time I just figured I had a pinched nerve or something, and after a week or so it didn’t bother me again so I didn’t think of it. Another thing that’s bothered me on and off for about 9 months is sore mouth and tongue – it just feels raw and sore, especially around the tip of my tongue and underneath my tongue. At an urgent care visit early last fall, a doctor wrote that off as dry mouth due to a sinus infection. Lately I’ve noticed occasional tightness in my chest and a tendency for my heart to be sort of “thudding” in my chest – even though my BP and heart rate are usually normal when I see the doc. I get winded just climbing up 5 or 6 stairs. While I am overweight, I was in pretty good shape up until all this started. I also get aching in my arms and legs – just a deep dull ache – reminds me of having growing pains as a kid. So my actual questions: Does all of that sound like B12 deficiency? Are symptoms of B12 deficiency constant, or do they come and go? For example, I’ve had sore tongue/mouth off and on over the last 9 months – but I don’t notice it every single day. HOW do you get a doctor to take you seriously when they’ve done the “standard” tests and tell you that you’re fine? For example, I’ve had a normal CBC and B12 level. (I know I did not have an MMA or homocysteine level done though). How do I convince my doctor that is not enough to prove I’m not deficient?
    snoopy24 9 Replies Flag this Response
  • Hi Snoopy24, Like you, early on I had stomach problems with acid reflux. At first, I used antacids then Tagamet (cimetidine) for about 6 months and finally my stomach was somewhat better for about a year. Then my other problems started....being tired all the time...sleeping 14 to 18 hours a day, having headaches that got to the point of being there 24/7, numbness and tingling in arms and legs. Your symptoms of sore mouth and tongue are very much symptoms of pernicious anemia (PA).You said that you had an MRI...What part of the body did you have it? Sally is right..in that the symptoms of B-12 deficiency can be the same for MS. Usually doctors do MRI's of the brain and spinal cord to check for MS. Keep pushing your doctor for answers. In the link below, is alot of helpful info. Print yourself a copy of it and take it with you the next time you go to the doctor.www.pernicious-anaemia-society.org/pa-article.pdfIt will tell you: What pernicious anaemia is...it will tell you what the symptoms are...what tests are done to determine if you have it...what the treatments are. If you have pernicious anaemia...what other tests you should have done.If, after reading this info...and you still would like more info...check out the website I have posted in my previous posting. It is a very good website...with alot of people there (me to) that can help with answers and links to answers.TAKE CARE...SKEETER.
    Anonymous 42789 Replies Flag this Response
  • My reply to Sally Pacholok, R.N., BSNI have been struggling with some neurologic symtoms like Burning sensation/tingling/numbness in hands and feet, mostly in left side but do see in right side as well and also has cold feet in morning . In last Sept i was disgnose Hashimoto's Thyroidities (Hypothyroidism) since than i have been taking Levoxyl ,m my TSH and FT4 are normal now but i still have fatigue/tiredness/same PN symptoms before it was only tingling and numbness now i have burning sensation as well in the night . My GP tested b12 in oct and it came out 285 which is for her considerably low and need to start B12 supplment orally i started taking 1000mcg /every day . In dec i went to my Neruologist to get some investgation of muscles weakness and PN symptoms. He has done serious test to rule out Mysthania Gravis by testing some antibody test and also perform MMA and Homeostyine. All came back normal accept MMA which was considerably high i don't remember exact value but i can look for my previous result and let you know , however my b12 was normal it was 700. My concern is . Does oral b12 suppement is not working ?. I have been taking B12 supplement since Oct and test MMA in Dec which was high but normal b12 , so that means oral supplement is not really doing anything as i still hav neurologic symptons ?. Do you think Thyroid manifest all these symptoms even though it came to normal after regular dose of levoxyl ?Please advice any help to get my life normal and relief with PN symptoms which is infact getting bit worse than b4 ?I am going to order your book to learn more.Thanks
    Anonymous 42789 Replies Flag this Response
  • This is an excellent teaching case that perfectly demonstrates how high dose oral B12 is not effective in many cases. Your signs and symptoms of PN, fatigue, tiredness, burning and now muscle weakness are from B12 deficiency--- and the oral B12 is not effective in your case. It is not getting through the blood-brain barrier---you need to immediately start B12 injections (hydroxocobalamin 1,000 mcg daily x 7, then once a week x 4) and then go with how the neuro symptoms are going. Your serum B12 of 700 is irrelevant--- it is 700 because you have been taking orally 1,000mcg a day for about 2 months----- but your neurologist proved that your B12 deficiency is still present and the oral B12 is not effective--- because he was smart enought to order the MMA which is still elevated. When the MMA is elevated that means you have a B12 deficiency---- the serum B12 test can pick up analogues in your serum and report out high level from taking oral pills--- but it is not getting through to the nervous system or brain-- so the damage B12 deficiency causes---- is still going on. This is why when people start taking oral or sublingual high-dose B12 on their own--- before getting proper testing can really cloud the clinical picture (ie. lab tests) You having Hashimoto's (which is an autoimmune disease) is common for people to have B12 deficiency because one reason people get B12 deficiency is from an autoimmune disorder called (autoimmune pernicious anemia). People who have pernicious anemia need to have their thryoid checked yearly (because they are at higher risk of getting other autoimmune diseases----especially thryoid--- which is Hashimoto's and Grave's disease. You have to get on injections immediately--- your goal is to reverse the neuropathy---- now you are having muscle weakness----- which the B12 deficiency is progressing---- this is serious--- you can end up in a wheel chair or using assistive devices to ambulate and permanent painful neuropathy, among other problems. Again, I am so pleased your neurologist ordered the MMA---- this is proof the B12 deficiency still exists--- and you had a serious B12 deficiency. Maybe it would have been even higher before taking the pills--- but injections will bring down the MMA rapidly. The goal is to reverse your neuro S/S and any damage. You having a serum B12 of 285 and signs and symptoms of B12 deficiency (numbness of hands and feet, burning sensation, fatigue, etc.) indicated your signs and symptoms were caused by B12 deficiency. Your first doctor or family doctor should have ordered the MMA and homocysteine before placing you on high dose oral B12 (1,000 mcg). (even though a B12 of 285 and S/S of peripheral neuropathy indicates B12 deficiency)--- so I am proud that he/she determined it was B12 and started you on B12--- but you should have received injections--- and you wasted 2 months where your body is still deficient--- and you are now getting more symptoms. Start getting the injections immediately and in 3 weeks repeat the MMA and you will see it in the normal range.You are correct the oral B12 is NOT working, this is B12 deficiency--- not thyroid. I don't understand how your neurologist did not see that the oral B12 was not working, and see through the serum B12 of 700---and place you on a series of injections---- because in your history you have been taking 1,000 mcg orally x 6-8 weeks--- which will correct the blood B12--- making it appear that everything is fine--- but it is not--- and your neurologist proved it by you still having an elevated MMA. I cannot stress how critical it is to get on injections immediately--- time is of the essence--- because you want to reverse as much nerve damage that has been done. Also, do not let them give you only one injection--- or 100mcg---- you need a series of injections and 1,000mcg each--- and hydroxocobalamin would be preferred over cyanocobalamin. If you have any further problems getting treated or need me to speak with your doctors regarding treatment I would be pleased to do so. I can be contacted via my publisher (Quill Driver Books 1- 800- 497-4909) and they will connect us together. Your case clearly demonstrates why oral, SL, and even patches may not be in people's best interest. I do not object to these forms in-between monthly injections (once the series is given)--- but when one stops and educates themselves on what B12 deficiency does to the body--- causes demyelination--- just like MS does--- and can permanently damage nerves-- cause permanent brain damage--- cognitive problems, dementia---you can't play around with this. Misdiagnosis, undiagnosis, or delayed treatment, or poor treatment can all result in permanent injury or disability.
    Anonymous 42789 Replies Flag this Response
  • Sally, is it possible that a B12 deficiency may be incorrectly diagnosed as multiple sclerosis? I was diagnosed with MS three years ago, at the age of 29. My symptoms were rather mild (tingling/numbness in fingers, L'Hermitte's sign, occasional double vision), but an MRI of my brain and cervical spine did reveal numerous lesions. My lumbar puncture was negative for O-bands, though these are usually found in MS patients. Based on the MRI and my symptoms, I was diagnosed with MS and began taking Betaseron, one of the interferon treatments for MS. I didn't really question my MS diagnosis until late last year, when my internist discovered in my annual bloodwork that I was slightly anemic, and further testing revealed I had a B12 deficiency (serum level of 178). My internist then ordered MMA and Hcy tests, which were within the normal ranges. However, given my fatigue, neuro issues, etc., he started me on B12 injections in January--1x/day for a week, then 1/week for a month, now 1x/month. Since then, I have been feeling remarkably better, no MS symptoms, and no new lesions on my recent MRI done March 19th. I have continued to take the Betaseron concurrently with the B12 injections. My question for you is, is it possible that all along I have only had a B12 deficiency, and not MS? How do I go about separating improvement due to B12 from improvement due to Betaseron? I have an appointment with my neurologist next Monday and I would like to be as informed and prepared as possible, as I suspect he will not be interested in discussing the possibility of discontinuing the Betaseron. I do, in fact, have a copy of your book, I bought it shortly after I found out about my B12 level and it started me thinking about the whole MS thing. Thanks for any help you can give me.
    Aquarian Librarian 1 Replies Flag this Response
  • 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
  • Sally you are a wealth of information!! Was just wondering if it will do harm if I started to take B12 pills on my own without having tests done. I just started to take 500mcg pills because I do have some numbness noted to my toes/fingers. I will ask my MD to check out my B12 levels when I go see her next week. Thanks for your advice
    Anonymous 42789 Replies Flag this Response
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  • Sally you are a wealth of information!! Was just wondering if it will do harm if I started to take B12 pills on my own without having tests done. I just started to take 500mcg pills because I do have some numbness noted to my toes/fingers. I will ask my MD to check out my B12 levels when I go see her next week. Thanks for your advice Do not take any B12 until your doctor tests you, you will alter the test results--- and you will never know if B12 deficiency is causing your signs and symptoms. When your doctor does the serum B12 ---he/she needs to simaltaneously order a MMA test. After your blood is taken--- then go ahead and try some B12 pills. Sally
    Anonymous 42789 Replies Flag this Response
  • Hi Sally-I just finished your book. I wanted to be prepared when I get back the results of my b12 serum blood test. Here's my story--in a nutshell.Was diagnosed with low thyroid and a goiter about 5 years ago. Have been suffering from what I thought was "restless" legs for quite some time and I've been taking Requip at night to help with the severe aches in my legs. Over a year ago, I had 3 metetarsal fractures in my left foot.( for no particular reason) Had a boot cast for almost 12 weeks because they weren't healing very well. Also started having nerve problems and a lot of pain. Podiatrist diagnosed me with RSD, because of the hot and cold, color changes and shiny appearance of my foot.Went to a neurologist who did Emg and said I had peripheral neuropathy. I started doing water therapy in my hottub which seemed to help. The week before I was set to go back to work ( I was a n outside sales person and couldn't do my job ) I was walking slowly and felt a sharp pain in my right foot. Went immediately to get an xray which showed alot of fluid and nothing else..had an mri done ..still just fluid..was told it was probably lupus and to see a rheumitologist. He ordered a string of urine and blood work including a bone scan and bone density. No lupus or osteoperosis, but did find a fracture in right foot that was just begining to heal. Then went to an ortheopedic who said it was my back and sciatica. Not so, said the back dr. it's probably Marie-Charcot-Tooth disease and to see a Neuro on the university teaching level. Went to U of Penn to see expert on peripheral neuropathy. He ruled out any large nerve damage and did glucose test for diabetes. Not diabetes, but mentioned, almost offhand that my b12 is in the low normal range and ordered MMa ( but not urine test)My symptoms are these:Severe pain in calves and feet--feet feel like they have broken bones. When I wake up in the morning, I shuffle to the bathroom because it feels like walking on sharp rocks.Shooting pain and numbness-especially in morning, in hands up to elbow.Awkward gait and balance--tend to veer off course when walking.Pain and achiness after doing any physical exercise, even walking around the block.Breathlessness.Fatigue.Weight gain--this is where I don't seem to fit the mold. But I've been eating alot ( I'm a good cook and have always loved to eat) and haven't been able to work out because of injuries. I'm also depressed.Memory loss I attributed to "old age"--I'm 45.Unfortunately, I like to drink wine.Two to three glasses. Everyday. Does this make me an alcoholic? I've been to so many doctors who don't seem to know a thing, and am getter physically and emotionally worse. I feel like a complainer all of the time. Four years ago, I was a personal trainer with 14% body fat. Now, I'm a fat shadow I what I used to be--in pain all of the time, tired, and seemingly, losing my ability to even walk anymore. When I try to start even the lightest workout, I'm in so much pain the next 2 days, I've been fearing any exercise at all. What do you recommend I seek as far as more testing? I know you can't determine until my test comes back, but have you ever heard of the symptoms that I have been experiencing? That you so much for you book and your time...
    ladycooks 3 Replies Flag this Response
  • Hi everyone,For over a year now I've suspected a B12 deficiency of some sort. It started with numbness in my arms during sleep. It started gradually with my hands and fingers and as the months progressed I found that I would wake up in the middle of the night or the morning with completely numb arms. For quite a few months I figured I was just sleeping wrong but the numbness started happening every night, I had become quite tired/lethargic and my energy felt like it was bottoming out. . .basically I got fed up. I went to my doctor at the university I was studying at and she suggested a whole bunch of tests: CT scan, X-rays, and MRI of the cervical spine, and Nerve Conduction Studies. No blood work.Everything came back normal except for the Nerve Conduction Studies -- the doctor there said I had carpal tunnel in both wrists, that it was rare for my age (22 at the time, 23 now) and I would probably end up having surgery. This all happened in April/May of 2006By August I started to have strange sensations in my legs while sleeping -- kinda like numbness but also like electrical sensations or creepy crawlies deep in my legs. The arm numbness was still coming and going as well. In September I started at graduate school in a new university. In October I went to see a doctor there about my legs. She sent me to a Neurologist, he didn't think it was anything but suggested a brain MRI and to see him again in 4 months. Still no blood tests. By January my concentration and memory had begun to suffer, I was totally exhausted all the time, my hair was falling out, I was having some dizzy spells (especially when standing after sitting), and I was still having these sensations. So I went to my new primary care doctor at home. I told her all my symptoms and my visits with the doctors at school. She was shocked no blood had been taken and suggested a problem with B12 or Iron. My blood test results showedB12 level: 250Folate: 2000 something (I'm sorry I didn't get a copy and don't remember the exact number or range - she said it was high though and that probably meant I "ate a lot of green vegetables")Ferritin: 30CBC and red blood cells all normal showing no anemia.She told my I was fine, suggested it was stress and sent me out of the door kind of dazed. I read up on B12 and found that levels under 400 can be problematic. I suggested this at my appointment with the neurologist who told me my B12 was fine and that I need to take more folate (despite my already high levels) -- He just made me more frustrated and confused.Now I have started having some pains in my chest when exercising and during rest (more like a slight tightness), some have woken me up from sleep as well. I have also started to get cracking around my mouth a few times and I've had the first canker sore since I was about 6. I want to suggest more tests from my primary care physician but I dont' know how to approach her. I am a little leary to go to her because I feel like she will just suggest that I am just stressed or some kind of hypochondriac.Any suggestions? Sorry this is so long, actually I feel better just being able to write everything down. Thanks,Erin
    firenze11 1 Replies Flag this Response
  • Hi everyone, For over a year now I've suspected a B12 deficiency of some sort. It started with numbness in my arms during sleep. It started gradually with my hands and fingers and as the months progressed I found that I would wake up in the middle of the night or the morning with completely numb arms. For quite a few months I figured I was just sleeping wrong but the numbness started happening every night, I had become quite tired/lethargic and my energy felt like it was bottoming out. . .basically I got fed up. I went to my doctor at the university I was studying at and she suggested a whole bunch of tests: CT scan, X-rays, and MRI of the cervical spine, and Nerve Conduction Studies. No blood work. Everything came back normal except for the Nerve Conduction Studies -- the doctor there said I had carpal tunnel in both wrists, that it was rare for my age (22 at the time, 23 now) and I would probably end up having surgery. This all happened in April/May of 2006 By August I started to have strange sensations in my legs while sleeping -- kinda like numbness but also like electrical sensations or creepy crawlies deep in my legs. The arm numbness was still coming and going as well. In September I started at graduate school in a new university. In October I went to see a doctor there about my legs. She sent me to a Neurologist, he didn't think it was anything but suggested a brain MRI and to see him again in 4 months. Still no blood tests. By January my concentration and memory had begun to suffer, I was totally exhausted all the time, my hair was falling out, I was having some dizzy spells (especially when standing after sitting), and I was still having these sensations. So I went to my new primary care doctor at home. I told her all my symptoms and my visits with the doctors at school. She was shocked no blood had been taken and suggested a problem with B12 or Iron. My blood test results showedB12 level: 250Folate: 2000 something (I'm sorry I didn't get a copy and don't remember the exact number or range - she said it was high though and that probably meant I "ate a lot of green vegetables")Ferritin: 30CBC and red blood cells all normal showing no anemia. She told my I was fine, suggested it was stress and sent me out of the door kind of dazed. I read up on B12 and found that levels under 400 can be problematic. I suggested this at my appointment with the neurologist who told me my B12 was fine and that I need to take more folate (despite my already high levels) -- He just made me more frustrated and confused. Now I have started having some pains in my chest when exercising and during rest (more like a slight tightness), some have woken me up from sleep as well. I have also started to get cracking around my mouth a few times and I've had the first canker sore since I was about 6. I want to suggest more tests from my primary care physician but I dont' know how to approach her. I am a little leary to go to her because I feel like she will just suggest that I am just stressed or some kind of hypochondriac. Any suggestions? Sorry this is so long, actually I feel better just being able to write everything down. Thanks, Erin Hi Erin, Yes, you have a vitamin B12 deficiency. A serum B12 of 250 and all your symptoms is consistent with a B12 deficiency. Many times people who have a B12 deficiency the folic acid--- will be high. How misinformed and crazy for the one doctor to tell you to take more folic acid! You may have perncious anemia--- because your ferritin is also low (which tells you about your iron stores) under 50 means your iron stores are low. People with pernicious anemia have low ferritin levels because they lack hydrochloric acid in their stomach. Yours is not real low-- but it is under 50. At the time of my diagnosis my ferritin was only 8--- the highest I get up to is around 20--- but my serum iron is good and all other iron studies great. I too at the age of 21 was never anemic--- you do not have to be anemic (which confuses the doctors). If you eat enough foods that have folic acid (plus the governement has fortified grains and cereal with folic acid) you will not have enlarged red blood cells (macrocytosis) which confuses your doctors further. Again, you don't need to be anemic nor macrocytic to have a true B12 deficiency. You need to get the following tests done pronto (BEFORE TAKING ANY B12 OR GETTINNG ANY SHOTS): MMA, homocysteine, serum gastrin, and parietal cell antibody (for starters) -- if your doctor refuses to do it--- you could always get the urinary MMA done at Norman Clinical Labs via the mail (costs $80 or $85 now) Go to this site:www.b12.com It is unbelievable that your doctor did all these expensive tests without even including possible B12 deficiency. Then your primary care doctor --- at least makes the connection of your signs and symptoms--- but then when the serum B12 is 250 she discounts this!!!!! As you have been reading this forum--- there are many reasons for B12 deficiency-- your diet, malabsorption syndrome, autoimmune disease, drugs (PPI, alcohol)-- dental work or surgery--- where nitrous oxide was used--- did you recently have your wisdom teeth removed (your at the age when this takes place). You need to get these tests done, and start B12 immediately. Our book will help you understand B12 deficiency and pernicious anemia better. Your so-called "carpal tunnel" could be from B12 deficiency---- and also--- many people who truly have carpal tunnel improve with vitamin B6. Maybe have a dialouge with your doctors--- ask them if they would rather rule out B12 deficiency completely-- or have you injured in the next year or two where a malpractice suit needs to be filed--- due to their ignorance. No one can lay a hand on you and say--- you don't have B12 deficiency---- unless they test you. Your serum B12 is 250 and that is very low. Mine was 220--- and I had/have autoimmune pernicious anemia. I think it is because of your age, no anemia, and no macrocytosis that it is fooling them (but they are not up to date on B12 deficiency---even though all of this has been published in the medical literature for over 2 decades--- it is not being taught in medical schools). Also, because you are articulate and young--- they probably are making you out like your some psych case--- but keep pushing--- this is your life we are talking about----don't let them intimidate you. Please go on your computer and download this article: type in whatever search engine you have: and an aritcle that this doctor published in Postgraduate Medicine, July 2001 will pop up that you can download and print out for free. It is very informative talks about B12 under 400 that MMA, Homocysteine needs to be done. Take it in to the office with you and insist it be done! Again, please get the tests done, and get treated--- you could start the high dose methyl-B12 5,000mcg lozenges twice a day--- after testing or Norman Clinical Lab urinary MMA. BTW: canker sores, cracks in the side of your mouth can be from different B vitamin deficienies (which B12 can be one of them). Warning--- B12 deficiency is serious. There was a woman who lived in the Midwest and was a nurse and a manager of a floor for 10 years. She had a B12 deficiency that went undiagnosed for years. Her doctors, (some who were her friends and colleagues) dismissed her symptoms. This continued for years. She became so B12 deficient that she finally got severely anemic and macrocytic. Her doctors still misdiagnosed it. She received blood transfusions and they were looking for a GI bleed. She started using a cane to walk because she was so off balance and would fall. She started to miss a lot of work, because she was so weak and could barely get out of bed. She became macrocytic--- and the doctors assumed she was an alcoholic (which she did not even drink--- because she had a sensitive stomach). When she was hospitalized to add insult to injury--- the social worker assigned to her--- because they thought she was psych--- because she started having memory and cognitive problems kept asking her husband if she was a "closet drinker", they asked the staff she worked with if she was a closet drinker. Anyway--- her B12 deficiency progressed. Finally she got a blood clot in her lung (pulmonary embolism) which is caused from high homocystiene---which is caused by severe B12 deficiency--- and one doctor finally put everything together. But by this time--- years had gone by--- and the B12 deficiency injured her--- she was bedridden for a time, then progressed to a wheel chair--- she was only 45 years old when she was diagnosed. She is now 55 years old--- and 10 years later--- she is physically and mentally disabled--- she uses lobster crutches to ambulate, has cognitive and memory problems. She has a host of other problems--- her and her family sued--- and was awarded 3.1 million dollars. 10 doctors were involved in the suit (all that failed her--- some of them were her colleagues) and 2 different hospitals. But she is not a winner--- her life is destroyed, her family is not the same---- no money in the world could ever replace one's health, mobility, and cognition. She is on permanent disability. She probably had B12 deficiency starting in her late 30's. Untreated B12 deficiency is serious, remind your doctor this simple fact---it may get their attention. Sally
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  • Sally,This is from the 40yr old RN who you've helped a few times. Brief recap: After years of gastric complaints and over the counter tagamet and prilosec use...Acute onset of tingling, tremors, buzzing, "weird gate", burning paresthesias that spread all over body in January. MRI's neg, Lumbar puncture neg...initial blood work was B-12 301, Ferritin 20, MCV 96 ...all "normal" according to Dr. Gave B-12 shot, started on Mentanex and Lyrica (for neuropathy) then 6 weeks later drew a homosystine and MMA...normal. (duh) After 5 weeks on Mentanex..symptoms have "stablized" some days minimal..some days bad, but more better days than bad. With a sock or a shoe on I feel like I walk normal, barefootedness feels weird still.Took your book with me to my visit on Thursday, and he agreed to do Antiparietal cell Antibody test and Intrisic factor antibody test after seeing newly aquired "white freckles" on my legs and arms. He gave me a perscription for Cyancobalmin 1000mg injections Sub-Q every two weeks in addition to the daily Mentanex I am taking.(Even though he is doubtful B-12 has anything to do with this!) Also agreed I should see gastrointerologist "just in case" because I am still complaining of gerd. (That is in two weeks). I am giving myself the injections every other day for the first week like you recommended and then will do once a week for a month etc. I feel pretty good after having two injections...hoping its more than placebo effect. A couple of questions:1.Why do you say IM instead of sub-Q? ( I did do it IM eventhough he said sub-Q)? 2. Would an MCV of 96 be significant given the B-12 of 301 and Ferritin of 20? 3. Do you recommend K replacement with so much B-12 or just add more into diet? Thank you for your input. I was blown away by your book and have talked it up to my coworkers at the hospital! Even if I do not have PA, I am convinced my B-12 level was too low for me and the fact that I have leveled off with symptoms and feel better since supplementing encourages me. I am embarrased that as an RN I didn't pay enough attention to the amounts of OTC acid reducers I was taking...I just figured it was stress, caffeine and working the over night shift. I am only 130 pounds and 5'6" never been overweight, never smoked, only drink the occasional alcoholic drink.....considered myself indistructable! Again, thank you for your time!Angela Hi Angela, I'm glad you are feeling better! No, the injections are not a placebo effect, you needed the B12! I state in the book intramuscular (IM) verses subcutaneous because that is what the manufacturer of the B12 states how to give it (unless they have recently changed it on the package insert--- but I doubt it). The hydroxocobalamin package insert from the pharmaceutical company also states to give it IM. People who are obese, as you know being a R.N.-- we try to give it IM-- but it obviously sometimes goes in the SQ tissue. It won't hurt you if it goes in SQ and won't injure the tissue--- but (it won't leak out--sometimes SQ injections can ooze out a little--- but basically relaying what the manufacturer reccommends. Being on PPI for as long as you have been--- can explain your B12 deficiency--- you don't necessarily have to have pernicious anemia. B12 deficiency (from whatever cause) can cause the same damage to the body if untreated. A big mistake physicians make is this --- when the patient doesn't have a parietal cell antibody or intrinsic factor antibody they conclude --- you don't have PA--- and take away the B12 shots--- which is silly-- because there are many other reasons for B12 deficiency. B12 deficiency (whatever the cause) if untreated---is just as injurous or deadly as B12 deficiency from PA. I really don't understand why many doctors conclude this--- but I have had numerous patients report that their doctor tested for these antibodies and the B12 was taken away. Last week, I had another case of chronic misdiagnosed B12 deficiency. A 66 year old man who had 8 visits to the ER in 4 months with 4 admissions and numerous outpatient blood work done---- he was seen by a gastroenterologist, psychiatrist, internist, family doctor, surgeon, ER doctor and all failed to diagnosis his blatent B12 deficiency. This man is from India, (living in the U.S. for decades) has been a vegetarian for 30 years, and for 8 years has had no chicken, fish, or red meat. He stopped eating chicken 8 years ago because he was having such stomach problems that the meat would just sit in his stomach and he couldn't digest it--- so his diet consisted mostly of pureed beans and pita bread. He was a very good historian, and readily admitted he was depressed-- yet had intense anxiety, was paranoid, and kept stating his "head was not right". He had paresthesias and severe leg pains. He used a single prong cane to walk, had balance problems-- and stated had near falls for the last month--but furniture would catch his fall. He wore gloves while in the ER because his felt numbness to his fingers and felt they were cold--- yet they were warm. July of 2006 he suffered a PE and was placed on Coumadin (chronic B12 deficiency causes hyperhomocystinemia--- which causes blood clots). (this is what the woman in chapter 1 who won the 3.1 million dollar malpractice--- how they finally figured out her B12 deficiency when she had a PE). He also was having severe upper abdominal pain--- and had a pallor to his Indian skin. He was also on a PPI. Anyway, I pleaded with the ER physician to test him and he was indeed B12 deficient with an elevated MMA. Surprise, surprise. It is really unbelievable that this man couldn't have been diagnosed by the numerous doctors and other health care professionals he encountered---until he was seen by an ER nurse---- totally absurd--but very telling on what an epidemic we really have on our hands. I gave this example because this man had a severe B12 deficiency because of his diet--- but it is just as injurous or deadly. (he also really needs his stomach scoped EGD because of some other symptoms he was having-- yet they did a colonoscopy--- months ago-- but never an EGD. Anyway, his signs and symptoms were textbook for B12 deficiency--- and him being a vegan---- placed him at high risk. If it is hard for the medical community to diagnose easy classic text-book cases--- can you imagine what is happening to the rest of society? They even placed him on a PPI!I think they didn't contemplate B12 deficiency because he was not anemic or macrocytic--- which is a big mistake. I believe you will do better on the B12 injections--- and hopefully all your neuro signs and symptoms will reverse. Glad you liked the book--- please write a review on Amazon.com---- it will help others. Sally
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  • Hi Angela, I'm glad you are feeling better! No, the injections are not a placebo effect, you needed the B12! I state in the book intramuscular (IM) verses subcutaneous because that is what the manufacturer of the B12 states how to give it (unless they have recently changed it on the package insert--- but I doubt it). The hydroxocobalamin package insert from the pharmaceutical company also states to give it IM. People who are obese, as you know being a R.N.-- we try to give it IM-- but it obviously sometimes goes in the SQ tissue. It won't hurt you if it goes in SQ and won't injure the tissue--- but (it won't leak out--sometimes SQ injections can ooze out a little--- but basically relaying what the manufacturer reccommends. Being on PPI for as long as you have been--- can explain your B12 deficiency--- you don't necessarily have to have pernicious anemia. B12 deficiency (from whatever cause) can cause the same damage to the body if untreated. A big mistake physicians make is this --- when the patient doesn't have a parietal cell antibody or intrinsic factor antibody they conclude --- you don't have PA--- and take away the B12 shots--- which is silly-- because there are many other reasons for B12 deficiency. B12 deficiency (whatever the cause) if untreated---is just as injurous or deadly as B12 deficiency from PA. I really don't understand why many doctors conclude this--- but I have had numerous patients report that their doctor tested for these antibodies and the B12 was taken away. Last week, I had another case of chronic misdiagnosed B12 deficiency. A 66 year old man who had 8 visits to the ER in 4 months with 4 admissions and numerous outpatient blood work done---- he was seen by a gastroenterologist, psychiatrist, internist, family doctor, surgeon, ER doctor and all failed to diagnosis his blatent B12 deficiency. This man is from India, (living in the U.S. for decades) has been a vegetarian for 30 years, and for 8 years has had no chicken, fish, or red meat. He stopped eating chicken 8 years ago because he was having such stomach problems that the meat would just sit in his stomach and he couldn't digest it--- so his diet consisted mostly of pureed beans and pita bread. He was a very good historian, and readily admitted he was depressed-- yet had intense anxiety, was paranoid, and kept stating his "head was not right". He had paresthesias and severe leg pains. He used a single prong cane to walk, had balance problems-- and stated had near falls for the last month--but furniture would catch his fall. He wore gloves while in the ER because his felt numbness to his fingers and felt they were cold--- yet they were warm. July of 2006 he suffered a PE and was placed on Coumadin (chronic B12 deficiency causes hyperhomocystinemia--- which causes blood clots). (this is what the woman in chapter 1 who won the 3.1 million dollar malpractice--- how they finally figured out her B12 deficiency when she had a PE). He also was having severe upper abdominal pain--- and had a pallor to his Indian skin. He was also on a PPI. Anyway, I pleaded with the ER physician to test him and he was indeed B12 deficient with an elevated MMA. Surprise, surprise. It is really unbelievable that this man couldn't have been diagnosed by the numerous doctors and other health care professionals he encountered---until he was seen by an ER nurse---- totally absurd--but very telling on what an epidemic we really have on our hands. I gave this example because this man had a severe B12 deficiency because of his diet--- but it is just as injurous or deadly. (he also really needs his stomach scoped EGD because of some other symptoms he was having-- yet they did a colonoscopy--- months ago-- but never an EGD. Anyway, his signs and symptoms were textbook for B12 deficiency--- and him being a vegan---- placed him at high risk. If it is hard for the medical community to diagnose easy classic text-book cases--- can you imagine what is happening to the rest of society? They even placed him on a PPI!I think they didn't contemplate B12 deficiency because he was not anemic or macrocytic--- which is a big mistake. I believe you will do better on the B12 injections--- and hopefully all your neuro signs and symptoms will reverse. Glad you liked the book--- please write a review on Amazon.com---- it will help others. Sally Forgot you last question. No you don't need potassium supplementation---- that is for people who are severely anemic (requiring blood) --- because of the severe B12 deficiency--- that they need to monitor their potassium levels. Sally
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  • Sally, My Wife who is 40 had Optic Nueritis last July. She also had numb/tingling hands for two years previous to this during & after her last pregnancy. She now has bad Fatigue and also numbness & tingling in her legs/feet and bladder problems also. We bought your book last year (we are in the UK) and we insisted on a b12 serum test which came back at 170pg/ml. She has never had an MMA test done because her GP didn't know anything about it. All consultants she has seen say her symptoms cannot be caused by this because she didn't have enlarged red blood cells. She has been taking Jarrow 1000mcg methylcobalamin daily for over 6 months with no improvement in her symptoms. She recently had another serum B12 test which came back at 640pg/ml. She has been a vegetarian for over 20yrs. She has since been diagnosed with MS due to MRI lesion in her spine(across C2,C3 & C4), positive oligoclonal bands from LP and slightly slow VEP in her affected eye. Her brain mri was inconclusive (very small abnormalities). I have read that MRI abnormalities are possible with B12 deficiency but what about oligoclonal bands ? Whenever I bring this up with her neurologist or consultant they quote this and MRI as being the definite proof of MS. Not one doctor or consultant has shown any concern of her low B12. If we hadn't insisted through the information learned from your book we still wouldn't know she was deficient. I realise she should have been getting injections but no one seems to think she needs them plus she isn't keen on them herself. I think she is now herself convinced this is definite MS and would be happy for me to drop this but after everything I have read I won't be happy until this is completely ruled out. Thanks Alex
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  • Sally, My Wife who is 40 had Optic Nueritis last July. She also had numb/tingling hands for two years previous to this during & after her last pregnancy. She now has bad Fatigue and also numbness & tingling in her legs/feet and bladder problems also. We bought your book last year (we are in the UK) and we insisted on a b12 serum test which came back at 170pg/ml. She has never had an MMA test done because her GP didn't know anything about it. All consultants she has seen say her symptoms cannot be caused by this because she didn't have enlarged red blood cells. She has been taking Jarrow 1000mcg methylcobalamin daily for over 6 months with no improvement in her symptoms. She recently had another serum B12 test which came back at 640pg/ml. She has been a vegetarian for over 20yrs. She has since been diagnosed with MS due to MRI lesion in her spine(across C2,C3 & C4), positive oligoclonal bands from LP and slightly slow VEP in her affected eye. Her brain mri was inconclusive (very small abnormalities). I have read that MRI abnormalities are possible with B12 deficiency but what about oligoclonal bands ? Whenever I bring this up with her neurologist or consultant they quote this and MRI as being the definite proof of MS. Not one doctor or consultant has shown any concern of her low B12. If we hadn't insisted through the information learned from your book we still wouldn't know she was deficient. I realise she should have been getting injections but no one seems to think she needs them plus she isn't keen on them herself. I think she is now herself convinced this is definite MS and would be happy for me to drop this but after everything I have read I won't be happy until this is completely ruled out. Thanks AlexHi Alex,Your wife has a B12 deficiency--- proven by a serum vitamin B12 of 170. The very low serum B12 with her symptoms of B12 deficiency---- and her history of being a vegetarian for 20 years---makes the diagnosis. In cases like your wifes--- we still like to see the MMA and Hcy test---- to further prove it--- but since she began the 1,000 mcg B12 daily for 6 months it will be normal. The reason she may still be having symptoms after 6 months of B12 lozenges--- is that her B12 deficiency went on for some time without being identified---- and she may have permanent injury. However, in a case like hers---- injections are indicated-----she needs to have a series of B12 injections (I would use the hydroxocobalamin form-- and give several every other day--- and then once a week for 2 months--- and see if she improves. B12 deficiency can cause lesions in the brain and spinal cord---just like MS. If you Google B12 deficiency and MRI--- you will find numerous publications in the medical literature---even look at some of the references in our book (which gives the medical publication we footnoted).To treat a severe B12 deficiency--- (like your wife's) B12 lozenges is NOT the way to go. I understand this is not either of your fault--- but were forced to at least do something--- because your doctors have a major knowledge deficit regarding B12 deficiency. It is of interest that her serum B12 is only up to 640 (after all that B12). By giving shots (and in the hydroxocobalamin form) --- it will transfer through the blood-brain barrier better. Your wife may not like the idea of shots--- but in MS they sometimes treat with daily SQ shots (with MS drugs)---- and she needs to reverse as much damage as possible. Yes, it is easy for her doctors to say that this is MS---- and they will never admit that is was B12 deficiency---- because they do not want a malpractice suit. It has been known since the late 1800's that a person with a severe B12 deficiency or pernicious anemia does not have to have anemia or macrocytosis. This fact was AGAIN brought to the attention of the medical community in 1988 by an excellent review by Lindenbaum et al, that was published in the New England Journal of Medicine. Since this article was published 19 years ago, most experts who write about B12 deficiency (and publish chapters in medical texts) and other medical journals always site this article. So how your doctors are not aware of this common fact--- puts them with most of the medical community---- they need to be reeducated.Regarding the oligoclonal bands-- I do not know if there can be false-positives--- and also if this is seen sometimes in B12 deficiency. But your wife and doctors need to look at the facts:1. documented very low serum B122. symptoms of B12 deficiency: paresthesias, optic neuritis, fatigue, bladder problems In any event, you must insist on B12 injections. First of all, they will not harm her. Secondly, MS is a demyelinating disease (as is B12 deficiency)--- therefore--- true MS patients may benefit with extra B12--- to help repair any demyelination.There is a 40 year old woman who is a nurse that posted on this forum--- that has been on Metanx (which has 2,000mcg of methyl-B12, folic acid 2.2 mg and B-6 25mg) and it stopped her symptoms from progressing. She convinced her doctor to try the B12 shots--- has only received 2--- and felt a difference with the shots (she thought maybe it was placebo). You must remember the nurses case and your wifes are different--- she was on a PPI for 5 years--- your wife has been a vegetarian for 20 years and has been having symptoms of paresthesias for 2 years! B12 deficiency in vegans and vegetarians is very common. Her outcome may not be the same---- but she has to get shots.The last important thing I must mention--- is that with her chronic low B12 stores (being a vegetarian) and being pregnant is a great concern. Her B12 store further decreased because she transferred this to the growing fetus (another reason--- she is more deficient). Your children need to be checked for B12 deficiency. If she breast fed--- they really need to be checked. Reread the chapter in the book regarding children--- there is a big section regarding vegans/vegetarians--- IQ, developmental delay, etc--- and autism.Your children could easily get a urinary MMA test. (if you are going to test them do so before giving B12)--- if they have any behavioral problems or developmental delay--- you need to get them tested immediately.The article your doctor needs to read is this: Lindenbaum, J., et al. Neuropsychiatric disorders caused by cobalamin (B12) deficiency in the absense of anemia or macrocytosis. New England Journal of Medicine, 1988, 318: 1720-1728.This finding is now a fact--- anemia and macrocytosis absent in true B12 deficiency is common (I personally see it all the time) and it has also been documented in array of medical journals. B12 deficiency is a world-wide problem--- our U.S. doctors are just as uneducated as the doctor your wife is currently seeing---- our hope is to educate and close the gap. We use the MMA test with the B12 test to help diagnose patients who have a "normal" serum B12. A B12 of 170--- and a history of being vegetarian for 20 years and having numerous signs and symptoms of B12 deficiency--- is a no brainer---- she has B12 deficiency. This gives testimony where---B12 lozenges may not always work as well as injections----and her signs and symptoms may have gone on for so long --- untreated properly--- that some symptoms may be permanent. Sally
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  • Does any one know if it is okay to take over the counter oral B12 while I am waiting to see a doctor? I guess I just want to see if it makes a difference as I am suffering from severe muscle/joint aches, twitches/tingling as well as heavy fatigue and visual issues. I also had severe tooth/jaw pain and facial numbness about a month ago. I was tested for MS with MRI and no lesions, but have severe degenerative damage of the cervical spine. Can a B12 defciency cause arthritis and damage to my cervical spine? I am learning that if it is a B12 deficiency, than the oral would not really make a difference other than wasting money on the oral vitamin because my system would not absorb it as it has to go through my digestive system as opposed to shot and directly into my bloodstream? Is this correct or I am totally off on this? I do want to eventually be tested for a B12 defciency, but not sure if the oral vitamin will mess the test up in the future. I did have a B12 shot for the facial numbness about three weeks ago. How long will it stay in my system before it would be safe to determine a defciency? I have to wait until June 4, 2007 before I can see a Infectious disease doc. Any advice or knowledge on this would be greatly appreciated.
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