Discussions By Condition: Medical Stories

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.

Reply Flag this Discussion
  • my best friend and I both have read your book,she is suffering so badly.It all started in Feb.2006 she woke up with a weird feeling in her head.But it soon progressed to a dizzy feeling.She went to an ent because she thought it washer ear.Tubes later no help,they told her to live with it,they couldn't help.So she went to many nurologists first they said she had m.a.v. migraine associated vertigo. She got no better,went to a tmj guy,he almost killed her. She carried on like a trooper, until the terrible fatigue came on, just a few days,then a few more days,and now it is everyday non-stop! Then if that was not bad enough she now has debilatating muscle aches in her hips,thighs,calfs,and even her toes. She is also suffering from a cold numb feeling in her calfs. She has gone to a vasscular DR. nothing, nurologist,nothing. She has been to countless E.R.hospitals,therapists,yes she even thought maybe it was stress causing all these symptoms. Finally one Dr. suggested to do a b12 serum test, the test came back she was low 220. Finally something showed to abnormal, so the suggested her reciving b12 injections. She began the injections right away, but unfortunatly no one including her Dr. informed her about the potassium depletion that can occur. She had to find that out by reading your book. We had a question,when she went in for the potassium they took a b12 serum again and only after 2 injections it showed up a 1266. Is this normal? how can that be so high after only 2 injections? We are struggling with alot of questions, no Dr.'s she has been to know anything about b12 defficeny. They keep telling her it is stress,that is crazy.She needs help could you give us some insight,she has all the symptoms in your book, but no one will take her seriously . She has a little boy who needs his mother back. Thank you friend despretly trying to save her best friend.
    Anonymous 42789 Replies
    • February 28, 2007
    • 02:51 AM
    • 0
    Flag this Response
  • Just found this site, 4:20 AM - have read and posted to several things but seeing your post just made me cry. I am 66 years old, have suffered for years with fatigue, pain, stomach problems, thryrod, erratic and extra heart beats, and have been diagnosed with everything from MS, MG, Fibromyalgia, Chronic Fatigue, Spinal Problems, Neuropathy, pain sydromes, and of course, stress and depression. I knew I wasn't crazy, and just kept my mouth shut until the pain or fatigue would get so bad I would try again. What is so funny, is that a few weeks ago, went to my primary, told him I was going for a consult with a wonder doctor in NYC, and he looked at my bloodwork and said that my B12 was about 400 (I think) and decided to give me a double or triple shot - don't remember. I noticed I was not crying, and my husband thought I was better with the shot, but I didn'tpay much attention. Went to NYC, and doctor said I had an auto immune disorder (Hashimoto's, dry mouth & eyes, etc, etc,) did a lot of blood work, gave me a shot of methotrexate and told me to inject myself once a week, gave me prescriptions for folic acid, Lyrica, Prednisone - and I am not happy with taking meds anyway, so haven't had anything but first shot of methotrexate, due to take another tomorrow. Don't want to - but it is 2 weeks since I had B12 shot - feel like crying again, and, although I don't sleep well, usually stay in bed, but heart pounding in head and chest and pain and cramping in feet, ankles, legs and hips were so bad had to get up at 1:00AM after lying there for only about 2 hours. Doctor in NYC said you can only get B12 shots every 6 months, primary told my husband I can have them weekly if I want to - Do you think I should do this and forget all the meds I was prescribed - I like to do only one thing at a time so I know what helps and what doesn't, and nothing has helped me over the years. I will be ordering your book. Hope that this was my lucky day. Thanks for your info.
    erni119 14 Replies Flag this Response
  • Just found this site, 4:20 AM - have read and posted to several things but seeing your post just made me cry. I am 66 years old, have suffered for years with fatigue, pain, stomach problems, thryrod, erratic and extra heart beats, and have been diagnosed with everything from MS, MG, Fibromyalgia, Chronic Fatigue, Spinal Problems, Neuropathy, pain sydromes, and of course, stress and depression. I knew I wasn't crazy, and just kept my mouth shut until the pain or fatigue would get so bad I would try again. What is so funny, is that a few weeks ago, went to my primary, told him I was going for a consult with a wonder doctor in NYC, and he looked at my bloodwork and said that my B12 was about 400 (I think) and decided to give me a double or triple shot - don't remember. I noticed I was not crying, and my husband thought I was better with the shot, but I didn'tpay much attention. Went to NYC, and doctor said I had an auto immune disorder (Hashimoto's, dry mouth & eyes, etc, etc,) did a lot of blood work, gave me a shot of methotrexate and told me to inject myself once a week, gave me prescriptions for folic acid, Lyrica, Prednisone - and I am not happy with taking meds anyway, so haven't had anything but first shot of methotrexate, due to take another tomorrow. Don't want to - but it is 2 weeks since I had B12 shot - feel like crying again, and, although I don't sleep well, usually stay in bed, but heart pounding in head and chest and pain and cramping in feet, ankles, legs and hips were so bad had to get up at 1:00AM after lying there for only about 2 hours. Doctor in NYC said you can only get B12 shots every 6 months, primary told my husband I can have them weekly if I want to - Do you think I should do this and forget all the meds I was prescribed - I like to do only one thing at a time so I know what helps and what doesn't, and nothing has helped me over the years. I will be ordering your book. Hope that this was my lucky day. Thanks for your info.Talk about "I was not crazy"--- I knew I was not crazy, but I had all these symptoms. I was willing to try anything- even the unorthodox approaches to my unexplained condition.A NAET practitioner told me that I had developed an allergy to Vitamin B complex. So that explained why in spite of me taking the best quality of Vitamin ever made, I had not been able to recover completely.I did NAET treatment for allergies to vital nutrients- ufff I feel 10 years younger. I was allergic to Vitamin B complex, calcium, sugar, egg protein.I am also allergic to Vitamin T. You should try NAET and make sure you will be using the nutrients.Sincerely,Eatafruit78/
    Eatafruit78 960 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
  • 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, 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
  • 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, 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
    Anonymous 42789 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
    Anonymous 42789 Replies Flag this Response
  • 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
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • 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
    Anonymous 42789 Replies Flag this Response
  • No, I haven't found any literature supporting what Dr. Neubrander has stated about methyl-B12 going out of the system in 5 days. I believe he is making this statement--- because in the children he has treated with methyl-B12--- it holds them only for about 3-5 days--- that is why he made the protocol of giving it SQ every 3 days. Again, this is HIS findings in his own practice--- which I believe controlled studies need to be done by others desparately---- to reproduce his findings. I have personally seen hydroxocobalamin injections work-- like what Dr. Neubrander is describing--- and the injections are only given every 3 weeks. You would have to ask Dr. Neubrander directly about his research and findings--- I only describe what HE reports in his practice. I do not have a pediatric practice--- and cannot test and treat these children. Over the years, I have tested several friends-- or friends of friends--- and 5 out of 7 have come back positive for elevated MMA---- that is significant! Dr. Neubrander and I differ in opinion that I believe children should always be tested (and maybe some other inborn error of metabolism) would be found----and also he needs to document and publish his findings in medical journals. I do know that in July 2005 at the University of California Davis--- they started a 3 year study using methyl-cobalamin shots in children diagnosed with "autism" aged 3 to 8 years of age. This will be most interesting. I really don't think that 90% of children with autism are helped with methyl-B12---- but this is what Dr. Neubrander reports--- in time we will know. The question that needs to be answered--- is methyl the only way to go? It is much more expensive, and we must be cautious that monetary motives are not in play. My experience with hydroxo-B12 in 2 children with autism (friends) of mine are speechless. This goes against what Dr. Neubrander finds, that methyl-B12 is the only way to go. So the question is why did these 2 children respond to hydroxo-B12---it only makes sense that others would too. And what about the R.N. from Wisconsin that reported the dramatic change in her severely autistic 7 year old with oral cyanocobalamin (dose of 9,000 mcg per day). This is in it's infancy. What we do know--- is that B12 works for many "autistic" children. But I don't think methyl-B12 is needed for all children or maybe not even injections (after the recent report I got in June of 2006 of the high dose oral B12). Each child in specific--- and B12 may not even be their problem and treatment would be useless. Testing must be done--- and we need to start documenting what is happening with B12 in these children--- verses treating everyone like a cult. Sally Thanks Sally, Dr. Neubrander tells in this link (http://autismone.org/uploads/2006/Neubrander%20James.doc) how he got to his mb12 protocol, but the impression left is that it was a sort of “trial & error” guided by “ah-hah” results. This is what he says about MMA and Hcy values:“MMA values (methylmalonic acid) are good indicators for general nutritional deficits where “food B12or vitamin B12” gets to the crossroads where it must be converted into one of the two active coenzyme forms of B12– methyl-B12coenzyme or adenosyl-B12coenzyme. The assumption that one must make to use MMA as a marker for methyl-B12deficiency is that there will be an equal formation of methyl-B12coenzyme and adenosyl-B12coenzyme from each molecule of B12 that arrives at this juncture. However, it should be noted that MMA is a measure of intracellular adenosyl-B12, not methyl-B12, and therefore has no direct bearing on the body’s need for methyl-B12. Therefore, if there is an increased need for methyl-B12, it will not be reflected in the amount of MMA present, whether MMA is high or whether MMA is low. Elevated homocysteine levels have been reported to indicate the need for B12but due to the increased oxidative stress condition found in children on the spectrum, homocysteine is low-normal to low in the majority of these children, once again implying erroneously that methyl-B12is not necessary when in fact the opposite is what the child’s body really needs.” I don’t know of metabolism enough to judge whether the situation he describes above is possible or not. I couldn’t find any article to confirm or dismiss his suppositions, but I’ll keep looking for it ;) Thanks again,Sophia
    Sophia 5 Replies Flag this Response
  • Hi Sally and others who responded. Thanks so very much for your kindness in taking the time to respond to me. My relief is almost palpable, now that I have a clearer direction for explaining these neurological symptoms. I already had ordered your book and am in the process of reading it , Sally. I am a fellow RN, and I have a tremendous respect for your research and your devotion to your work. The neurosurgeon who suggested the B vitamins is not my own doc, but a friend at work ( I am a nurse). So I started myself on the B vitamins before I got in to see the neurologist... my visit was more than a month away at that point and I was desperately trying anything just to feel better! I will have a new PCP as of the first of May, and I am going to go in and request B12 shots. These past few months have been very frightening for me. I have a lot of questions about things that may have precipitated the seemingly sudden onset of my symptoms. One question that I do have...does anybody know whether it is okay for people with wheat/gluten sensitivity or possible celiac disorder to ingest Spelt products?? I was completely gluten free for a year, but then someone mentioned Spelt as being a safe alternative for folks like me. I went on a bit of a Spelt kick for a couple weeks, eating a lot of crackers and other Spelt items. I thought is was heavenly after such grain deprivation, until after a couple weeks of Spelt, when my hands and toes started with the tingling and numbness while I was sleeping. I immediately cut out the spelt but did not get any better, until I started the B vitamins a couple months later. I do not know if this Spelt and numbness correlation was coincidental or not. One more question...I have been taking the SL form of cyanocobalamin 2,500 mcg twice a day. Until the time when I am able to get shots, is there a better form or dose for me? Also, I have avoided Niacin because I am prone to insomnia. I have lately been having a dreadful time with insomnia, partially because of concerns over my neurological symptoms. Do any of the other B vitamins I am taking contribute to insomnia? My best regards to anyone who is reading. All replies are very much appreciated.Marianne I am sorry to read that you are suffering as well. I did finish Jeffery and Sally's book. I wish I had read it in 2005. The book is so helpful. I hope you get well soon or at least feel better with B12 shots. I cannot stand the feeling of numb fingers and even worse the cold feeling like my bones in my toes and fingers are frozen...The one thing I cannot live with is the extreme exhaustion. I was drinking 4 pots of coffee a day for the past 1.5 months just to keep going and still falling asleep while sitting up. I am down to two pots a day and drinking yerba mate tea in place of the coffee. I am not taking any B12 before I go in and hoping that the B12 shot I received 3 weeks ago will not affect my test. If it is a B12 deficiency, I want to make sure it is discovered. Up until 5 weeks ago, I was pretty healthy as well. I ran 2-3 times a week and gave it up because I was so tired. I did work out lightly last week. My weight is normal, but my muscles seem to have become so flabby in the last 6 months or so way before I stopped working out. That is unusual for me as I have always been very muscular and strong. I also work and care for my daughter and my sick mother. I am a single mom and until 5 weeks ago, I was on the move. It has been very hard for me to accept and get through the exhaustion. MS has been ruled out thank God, but until I find out what is causing this which may very well be a B12 deficiency, I have to go around acting like all is well. I am afraid too as the symptoms came on and off like a subtle wave. I never paid enough attention to them...I was too busy taking care of everyone else and blaming all my issues on stress until my face went numb/severe tooth/jaw pain and the exhaustion kicked in. Now, after receiving my test results and knowing that my spine is deteriorating and all the other symptoms combined, I am scared. I have been doing a lot of reading before I make my next move for help. So far, sally's book has really answered some long term questions not only for me, but for my family as well. B12 test will certainly be first on my list when I take my mother in. If I had followed my doctor's advice to visit a rheumatologist, I may have been given damaging treatment for arthritis. It just didn't feel right for me to go to a rheumotolgist. I was afraid that he would only treat the symptoms instead of finding out what was causing the symptoms. I don't know why I had such a strange feeling about it, but I am glad I didn't make that appoinment. Now, for me, no more blind doctor's appointments. I want to know everything that is going on as this may help or even save my daughter in the future from suffering. Don't give up. Hang in there and keep pushing for answers. I know the book will help. It sure opened my eyes even with double vision! ;) The one thing I love about this site is knowing that I am not alone....and there are great people here trying to help. Where else can you go when you are unwell, but have to pretend to be well and many doctor's lack good communication skills....
    2B or Not 2B 8 Replies Flag this Response
  • Sally, Shortly after having her first injection in her thigh yesterday my Wife says she has a funny taste in her mouth. She still has today and says it is making her feel a bit sick, is this normal ? Thanks AlexAbsolutely not normal. You can ask the doctor what other ingredients are mixed in with it (preservatives)--- is the hydroxocobalamin from a pharmaceutical company? It sounds as if your wife is having other health issues. I can't stress how important it is to follow-up on this gluten intolerance.Your wife needs to have celiac disease ruled out properly. If she has it--- and does not cease eating gluten (as well as many supplements and other products have gluten in them)---- she will always feel ill and she will slowly destroy her body. In a few posts back you stated she was found to be "extremely intolerant" to gluten---that means she has a major problem. She needs to be seen by a gastroenterologist--- have an EGD done and biopsy taken--- other blood tests--- and needs to go on a gluten free diet.Sally
    Anonymous 42789 Replies Flag this Response
  • Absolutely not normal. You can ask the doctor what other ingredients are mixed in with it (preservatives)--- is the hydroxocobalamin from a pharmaceutical company? It sounds as if your wife is having other health issues. I can't stress how important it is to follow-up on this gluten intolerance. Your wife needs to have celiac disease ruled out properly. If she has it--- and does not cease eating gluten (as well as many supplements and other products have gluten in them)---- she will always feel ill and she will slowly destroy her body. In a few posts back you stated she was found to be "extremely intolerant" to gluten---that means she has a major problem. She needs to be seen by a gastroenterologist--- have an EGD done and biopsy taken--- other blood tests--- and needs to go on a gluten free diet. Sally Sally, The brand of hydroxocobalamin she has been prescribed is Neo-Cytamen. She has now had her third injection. Any nausea she had seems to have passed so maybe it was just coincidence. She is also slowly starting to cut out Gluten and her diet should be completely gluten free hopefully very soon. The course she is being given is one injection(1000mcg/ml) every second day for two weeks, then one injection a week for one month, then one injection a month. Do you agree with this ? Thanks Alex
    Anonymous 42789 Replies Flag this Response
  • Hi Sally,thanks for replying,(box 267) I had an mri scan several years ago, which was normal apart from chronic sinitis, the first neurologist I saw in 2003 told me it can take 20 years for b12 stores to run out with ileum surgery, and told me it was a serotonin deficiency within the brain stem and spinal cord,what I had, no tests needed. The second neurologist agreed it wasn`t b12 , and your body has 20 years stores, which is when I looked on net and found the doctor who had been studying b12 deficiency for 25 years, who said it wasb12 deficiency due to Crohns and ileum surgery, which is how I got treatmentfrom my gp.After getting treatment, it was like having a big weight lifted off my shoulders,( lost my job in 2004) being given a cause, rather than just treating symptomswith tablets.Seeing my own doctor thursday ,I will mention testing for celiac disease,perhaps it would be worth seeing a different neurologist.Thanks for your helpMike.Hi Mike,Your doctor is very uneducated regarding B12----"20 or 25 years for your body stores to run out of B12" is an EXTREME EXAGGERATION, shame on him.First of all, every one is born with different body stores, depending on your genetics, your mother's stores, if she breastfed, etc. Secondly, drugs surgeries can help deplete normal stores--- so can other diseases, and stress (such as surgery). If you have Crohn's disease--- there is a malabsorption problem affecting B12 absorption--- for some time-- before surgery was required. The ileum has to be present to transfer the B12. So because there are many factors---one person may have stores for 2 years--- and another 6 years. Also depends on your diet for many years. I have read the body can store B12 for 6 or 7 years (that's the highest I have ever read in all the literature I have gone through--- but even this literature--failed to put all the other factors listed above into the equation. Telling you 20 to 25 years--- just shows you why the medical community needs continuing education desperately regarding B12 deficiency--- or he was just trying to blow you off--and not address your concern (which either way is poor practice). They also have this knowledge deficit when it comes to people have gastric bypass for weight loss. Each individual is different--- all will become B12 deficient in time--- and I hear the people tell me that their doctor tells them they have several years before B12 deficiency will be a problem---- which is a grave mistake. At work, there have been several people who have had gastric bypass--- (which I personally believe needs to be banned)--- but people are undergoing this surgery like crazy. Anyway, one girl became B12 deficient (with "normal" serum B12----but very symptomatic and elevated MMA) 12 months after surgery, another nurse became deficient after 22 months--- everyone has different body stores going in. Sally
    Anonymous 42789 Replies Flag this Response
  • Hi Mike,Your doctor is very uneducated regarding B12----"20 or 25 years for your body stores to run out of B12" is an EXTREME EXAGGERATION, shame on him.First of all, every one is born with different body stores, depending on your genetics, your mother's stores, if she breastfed, etc. Secondly, drugs surgeries can help deplete normal stores--- so can other diseases, and stress (such as surgery). If you have Crohn's disease--- there is a malabsorption problem affecting B12 absorption--- for some time-- before surgery was required. The ileum has to be present to transfer the B12. So because there are many factors---one person may have stores for 2 years--- and another 6 years. Also depends on your diet for many years. I have read the body can store B12 for 6 or 7 years (that's the highest I have ever read in all the literature I have gone through--- but even this literature--failed to put all the other factors listed above into the equation. Telling you 20 to 25 years--- just shows you why the medical community needs continuing education desperately regarding B12 deficiency--- or he was just trying to blow you off--and not address your concern (which either way is poor practice). They also have this knowledge deficit when it comes to people have gastric bypass for weight loss. Each individual is different--- all will become B12 deficient in time--- and I hear the people tell me that their doctor tells them they have several years before B12 deficiency will be a problem---- which is a grave mistake. At work, there have been several people who have had gastric bypass--- (which I personally believe needs to be banned)--- but people are undergoing this surgery like crazy. Anyway, one girl became B12 deficient (with "normal" serum B12----but very symptomatic and elevated MMA) 12 months after surgery, another nurse became deficient after 22 months--- everyone has different body stores going in. SallyHi Sally,Sadly I think most doctors in the uk still go by the blood levels of b12, whichis such a wide range at 180-800, my first level I ask to see was 202. Thenwhen your doctor refers you to a neurologist, and the neurologist still goes by the normal range, you don`t stand a chance of getting any treatment.I`m seeing my gp Thursday, hopefully get tested for celiac disease to rule that out. thanks again Mike.
    Anonymous 42789 Replies Flag this Response
  • Dear Sally, I have sat here for a few hours reading the posts about B12 deficiency. For starters I just turned 25 I have 3 children and I am a single mother. I have been passed through the doctor visits like a hypochondriac. They say I am young and I will be fine, or CFS deal with it. Others say that I have a lot on my plate and that the stress is wearing on me. I noticed a year and a half ago that I have severe swelling in my extremities, hands, feet and ankles. It doesn't not go away with time, rest, medications, or low sodium diets. I have gained 40 pounds due to the swelling. I have read on this forum all the symptoms that others are dealing with and I have to laugh as I have felt all of them. I was diagnosed with Fibromyalgia about 9 months ago. Since then I have again changed doctors and the new doctor ran the basic tests. Thyroid, cortisol levels and he ran the B12 levels. The reason that I changed doctors is because I have drastically deteriorated to the point that I am severely neglecting my kids basic needs such as getting them to school on time. Getting household chores done is a nightmare, almost impossible. I have recently at the age of 25 went on FMLA leave from work because of the incapacity to care for my family and work at the same time. In the past few months I have started to feel severe neurological troubles. I forget where I am going, easily confused, I forgot to pay utilities(electric) that were disconnected and had to be reinstated. My judgement has been off, in example, stopping at stop signs, walking into things, dropping things more than usual. Extremely emotional and severely irritable. Headaches, dizzy spells, etc. (Plus almost every thing else mentioned in this forum including digestive issues, diarrhea...)So I went to the new doctor two weeks ago. Last week I contacted the nurse and she said all the tests were fine except the B12 and said that the doctor requested that I start taking B12 supplements found at Wal-Mart and that was all she said. Of course I started taking SL tablets right away. So now I know that it is too late for them to run the other tests that you suggest along with B12. I am low on money for doctor visits and prescriptions, so I am going to see if I am eligible for medicaid while I am not working. My question is what do I do now? After researching this online, I am wondering if at 25 years old if my damage will be permanent. Also I would like to go back to the doctor and talk to him about the injections that you mentioned. But my main concern is that I know I have neurological problems and I am not sure what is the best way to address this with the doctor so that I will get his attention. I am super scared. I have taken, SL 1000mcg(methyl) tablets and Elavil at night for a week now (both daily) and actually nothing is changing except that I am getting worse. Any exertion brings on the burning feet and severe pain. Extreme fatigue is killing me, as a mother that can't properly care for my children. I don't want them to suffer any more because of what I am going through. I will try to get your book from the library as I can't buy one right now. But it sounds like something I need to do right away. Thank you for taking the time to put this out there for other people to read and to be informed. It really means alot to me to know that others are feeling similar things and that I am not the only person that cannot function as well as normal persons. That one other thing is that I am not getting any support from friends and family and they tell me I need to force myself harder to get things done for the kids sake. The only thing that they don't realize is that I am already forcing myself so hard to barely survive each day, and the more I do force myself the worse I feel. Vacuuming causes aches and pains for several days. Anyways I could go on forever. Thank you from the depths of my heart! Sincerely,Andrea
    andreamarie 2 Replies Flag this Response
  • Dear Sally, I have sat here for a few hours reading the posts about B12 deficiency. For starters I just turned 25 I have 3 children and I am a single mother. I have been passed through the doctor visits like a hypochondriac. They say I am young and I will be fine, or CFS deal with it. Others say that I have a lot on my plate and that the stress is wearing on me. I noticed a year and a half ago that I have severe swelling in my extremities, hands, feet and ankles. It doesn't not go away with time, rest, medications, or low sodium diets. I have gained 40 pounds due to the swelling. I have read on this forum all the symptoms that others are dealing with and I have to laugh as I have felt all of them. I was diagnosed with Fibromyalgia about 9 months ago. Since then I have again changed doctors and the new doctor ran the basic tests. Thyroid, cortisol levels and he ran the B12 levels. The reason that I changed doctors is because I have drastically deteriorated to the point that I am severely neglecting my kids basic needs such as getting them to school on time. Getting household chores done is a nightmare, almost impossible. I have recently at the age of 25 went on FMLA leave from work because of the incapacity to care for my family and work at the same time. In the past few months I have started to feel severe neurological troubles. I forget where I am going, easily confused, I forgot to pay utilities(electric) that were disconnected and had to be reinstated. My judgement has been off, in example, stopping at stop signs, walking into things, dropping things more than usual. Extremely emotional and severely irritable. Headaches, dizzy spells, etc. (Plus almost every thing else mentioned in this forum including digestive issues, diarrhea...)So I went to the new doctor two weeks ago. Last week I contacted the nurse and she said all the tests were fine except the B12 and said that the doctor requested that I start taking B12 supplements found at Wal-Mart and that was all she said. Of course I started taking SL tablets right away. So now I know that it is too late for them to run the other tests that you suggest along with B12. I am low on money for doctor visits and prescriptions, so I am going to see if I am eligible for medicaid while I am not working. My question is what do I do now? After researching this online, I am wondering if at 25 years old if my damage will be permanent. Also I would like to go back to the doctor and talk to him about the injections that you mentioned. But my main concern is that I know I have neurological problems and I am not sure what is the best way to address this with the doctor so that I will get his attention. I am super scared. I have taken, SL 1000mcg(methyl) tablets and Elavil at night for a week now (both daily) and actually nothing is changing except that I am getting worse. Any exertion brings on the burning feet and severe pain. Extreme fatigue is killing me, as a mother that can't properly care for my children. I don't want them to suffer any more because of what I am going through. I will try to get your book from the library as I can't buy one right now. But it sounds like something I need to do right away. Thank you for taking the time to put this out there for other people to read and to be informed. It really means alot to me to know that others are feeling similar things and that I am not the only person that cannot function as well as normal persons. That one other thing is that I am not getting any support from friends and family and they tell me I need to force myself harder to get things done for the kids sake. The only thing that they don't realize is that I am already forcing myself so hard to barely survive each day, and the more I do force myself the worse I feel. Vacuuming causes aches and pains for several days. Anyways I could go on forever. Thank you from the depths of my heart! Sincerely,Andrea Hi Andrea, You need to get B12 injections---- they work way better and faster than lozenges. Depending on how deficient you are--- your MMA may still come back elevated by taking pills--- but you need to get in done ASAP.With all your signs and symptoms---- you have to get injections--- and a series of injections to replace your body stores---- then your doctor has to figure out why you have a B12 deficiency. What was your serum B12?Depending how long you were deficient---may effect your response. The good thing is you are young--- and you may have a total recovery or at least 75%----but you must get on the injections---time is of the essence.Hydroxocobalamin 1,000mcg every day or every other day x 7 then once a week x 2 months----then your doctor can reevaluate your improvement orcontinued deficit and determine the frequency of further injections. B12 is cheap---- ask your doctor to prescribe you a 30ml vial of hydroxocobalamin--- and teach you or a family member how to give an injection to save money. 30ml vial of hydroxocoblamain costs about $35-$40--- but this is 30 injections worth. I don't know if Medicaid pays for it or what coverage you have. They may cover cyanocobalamin---- and you could initially try this if you cannot spare the money. It will treat the deficiency. They should be willing to work with you----since they have misdiagnosed you for some time---- and actually you would have a malpractice case if you suffer from any lasting injury. Go to your local library and see if they have our book--- or have them order it--- to save you money--- and learn about B12 deficiency. "Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, 2005. Knowledge is power--- it is cheap on Amazon.com or bookstore ($10.00-12.95)--- but save your money for your B12 injections--and once your library gets it in you can learn from it. Together with our publisher---we purposely made our book affordable for everyone. Also make sure your doctor looks for other disorders---- such as thyroid disease. B12 deficiency causes extreme fatigue, mental illness, neruo signs and symptoms, etc. Every woman who suffers frm post-partum depression and or psychosis---must have B12 deficiency ruled out using the MMA and serum B12---- but this unforunately is rarely done. Sally
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.