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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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  • 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
  • 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
  • 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
  • Dear Sally - I had written to you previously. I am the 66 year old woman with so many diagnoses and complaints over the years. As you suggested, I told my doctor about B12 shots, and he gave me one double shot, then I was going every week for a shot - do not know what type of B12. Felt better emotionally after first few shots, but with third shot, the depression did not disapate - but I continued to get shots. So far have had 4 shots - tried to talk to my doctor about other tests, but he says he only gives the shots, then later on checks to see if the B12 levels become normal. Very frustrating. Have appt. with him in a few days and will try again. Bought 3 of your books, gave one to a friend of mine with all you symptoms, and another friend who is exhibiting signs of what the doctors call early Altzheimer's. Told them to check with their doctors - if I cannot get help, maybe they can. Am pursuing my parathyroid problems and thyroid problems now - can only hope the combination will finally help me. I cannot take much more. It is very frustrating to go to doctors who are supposedly well informed, and just be given slip after slip of prescriptions, all of which have side effects, and no answers. Hoping I get some answers. Living in the NYC area should be a help, but it isn't. Once again, thanks for your help and interest, and thank you for your book. I knowthat it will make a huge difference in a lot of lives. I am suggesting to all my friends and family that they request the tests you suggest from their doctors, so there is a baseline, and not, like me, too late because I already had the shots.You are a very empathetic and knowledgeable woman and I am glad I was awake one night at 5:00 AM and found this site.Erni
    erni119 14 Replies Flag this Response
  • Dear Sally - I had written to you previously. I am the 66 year old woman with so many diagnoses and complaints over the years. As you suggested, I told my doctor about B12 shots, and he gave me one double shot, then I was going every week for a shot - do not know what type of B12. Felt better emotionally after first few shots, but with third shot, the depression did not disapate - but I continued to get shots. So far have had 4 shots - tried to talk to my doctor about other tests, but he says he only gives the shots, then later on checks to see if the B12 levels become normal. Very frustrating. Have appt. with him in a few days and will try again. Bought 3 of your books, gave one to a friend of mine with all you symptoms, and another friend who is exhibiting signs of what the doctors call early Altzheimer's. Told them to check with their doctors - if I cannot get help, maybe they can. Am pursuing my parathyroid problems and thyroid problems now - can only hope the combination will finally help me. I cannot take much more. It is very frustrating to go to doctors who are supposedly well informed, and just be given slip after slip of prescriptions, all of which have side effects, and no answers. Hoping I get some answers. Living in the NYC area should be a help, but it isn't. Once again, thanks for your help and interest, and thank you for your book. I knowthat it will make a huge difference in a lot of lives. I am suggesting to all my friends and family that they request the tests you suggest from their doctors, so there is a baseline, and not, like me, too late because I already had the shots.You are a very empathetic and knowledgeable woman and I am glad I was awake one night at 5:00 AM and found this site.Erni Dear Erni, Yes, I would pursue getting your thyroid checked out and parathyroid. You could see if the high dose methyl-B12 5,000mcg lozenges taken daily helps with your depression, some people swear by it, and I still would continue getting your B12 injections. Yes, once they give you an injection, the MMA test is irrelevant. There is also a prescription medication--- if you have insurance and would only have to pay a co-pay called Metanx (which has 2,000mcg of methyl-B12, B-6 25mg, and folic acid 2.2mg). Folic acid and B6 are also good for depression. I do not remember how low your B12 was, but if the serum was low you need your stores replaced. Make sure your doctor is giving you 1,000 mcg injections verses 100 mcg--- and that he/she is not diluting it with saline. That could make a difference. If you were low, you may need a series of injections verses weekly injections. They could also check out your hormones--- which when off can cause depression. I am so pleased you liked the book, and that you are helping others. Especially the seniors. This forum seems to have younger people asking about B12 deficiency and many who have been found to be B12 deficient. Even though B12 deficiency can strike any age, it really strikes the seniors--- and they are more prone for misdiagnosis. So this is a good lesson for anyone reading this--- to please be advocates for your parents, grandparents, neighbors, and friends. Any elder who has fallen--- needs B12 deficiency ruled out. Any elder who has pre-senile dementia, or even dementia diagnosed with Alzheimer's needs B12 deficiency ruled out. Any elder who is depressed or any other mental health issue needs B12 deficiency ruled out. Tremors, neuropathy, unsteady gait, anemia, pallor-----yes, needs B12 deficiency ruled out. Go with them to the doctor and insist on the simple 3 tests (B12, MMA, homocysteine). Please keep me posted if any of your friends get tested and what their outcome is. Put the word out, there is a new television channel for people over age 55 called Retirement Living TV, on CN8-The Comcast Network (Mid-Atlantic & North East) comcast entertainment television-channel 5 in Denver and DirecTV Channel 364. I was approached by one of the producers to talk on air about the epidemic of B12 deficiency. We will film sometime in late May, and when it is going to air, I will post it. But they are looking for someone to interview--- who has pre-senile dementia, or forgetfulness, confusion, foggy-thinking, or even dementia that has been tested and found to be B12 deficient, and there extent of recovery. Also, anyone who has fallen because of B12 deficiency over the age of 55 (we see this in the ER all the time---elders who have fractured (broken their hips) who fell because of unsteady gait which was caused by chronic vitamin B12 deficiency. How Retirement Living TV producer found me was from a woman who read our book, contacted them and told how her husband was misdiagnosed and greatly helped. He was diagnosed with dementia--- but it was B12 deficiency--- she educated his doctors---- and he has greatly improved. It is the readers and the community that will educate the public. I and my publicist have tried numerous shows (Date Line, Good Morning America, 20/20, Oprah, The View, etc.) and it seems the producers don't really understand the epidemic or even attempt to grasp what is going on. It is very disheartening that a disorder that can injure disable, cause dementia, cause people to receive unneccessary blood transfusions, causing falls, poor health, mental illness, and has a link to autism is completely ignored. This is affecting millions of people, and the producers don't find it news worthy and are irresponsible for not reporting this. As you can see this forum is somewhat of a testimonial in itself--- and it is mostly middle age and younger adults writing in. These news shows are more interested in who has murdered who, and what the latest celebrity is up to. If they took the time to read the book, and understand what is happening in our society--- and how this could be prevented and millions of people could be helped---- it would be a no brainer---- they would readily educate the public. But, I will not give up and will keep trying to raise awareness. Retirement Living TV may be the door we need to get to the general public. If your friend(s) comes back positive, they would like to interview her--- and would fly out to whereever she lives in the U.S. Because I work in an ER, I cannot give people out to interview who come back positive--- because of liability (physicians who have chronically failed to diagnose B12 deficiency in their patients could get sued---which in my opinion they should if the patient has been injured from B12 deficiency and they failed to diagnose them--they have that right---- but I still cannot give out this information, plus there are HIPPA laws. You can get in contact with me through my publicist at (800) 497-4909, Andrea Wright, Quill Driver Books, c/o "Could It Be B12? An Epidemic of Misdiagnoses." So, please keep me posted, and remind your friends to please get tested with the B12 and MMA, Hcy----- before starting B12. Best of luck to you! Sally
    Anonymous 42789 Replies Flag this Response
  • I have symptoms similar to those I have read in these threads. Here is a list of my symptoms; does anyone think they could be attributed to B12 deficiency? *Shooting, stabbing, burning pain in both legs, feet and toes ~ feels like the muscle and the bone*Pins and needles in legs, feet and toes (painful burning at times)*Pins and needles in arms, hands and fingers (painful burning at times)*Knee, ankle and toe bones feel like they are on fire*Wrist and finger joints feel like they are on fire*Extremely painful muscle spasms and cramps that will last for days in my calves, feet and in right bicep (leg spasms make it difficult or impossible toe walk)*flashing colored lights in peripheral vision of my left eye (they do not interfere with my eyesight, just annoying). So far, I have been diagnosed with depression, bipolar and anxiety. I did try paxil for a while but it did not help. The neurologist I went to said my flashing lights were migraines (no headache though) and prescribed depicote. I did not take it and do not plan to. I also had an MRI that did not show anything of particular concern. I have been shuffled from MD to MD and have just about had it. Any thoughts or suggestions out there? Thanks and God Bless!
    Anonymous 42789 Replies Flag this Response
  • I have symptoms similar to those I have read in these threads. Here is a list of my symptoms; does anyone think they could be attributed to B12 deficiency? *Shooting, stabbing, burning pain in both legs, feet and toes ~ feels like the muscle and the bone*Pins and needles in legs, feet and toes (painful burning at times)*Pins and needles in arms, hands and fingers (painful burning at times)*Knee, ankle and toe bones feel like they are on fire*Wrist and finger joints feel like they are on fire*Extremely painful muscle spasms and cramps that will last for days in my calves, feet and in right bicep (leg spasms make it difficult or impossible toe walk)*flashing colored lights in peripheral vision of my left eye (they do not interfere with my eyesight, just annoying). So far, I have been diagnosed with depression, bipolar and anxiety. I did try paxil for a while but it did not help. The neurologist I went to said my flashing lights were migraines (no headache though) and prescribed depicote. I did not take it and do not plan to. I also had an MRI that did not show anything of particular concern. I have been shuffled from MD to MD and have just about had it. Any thoughts or suggestions out there? Thanks and God Bless! Your signs and symptoms sound like B12 deficiency but could also be the beginning of MS. You absolutely have to have B12 deficiency ruled out by having any doctor order the following: serum B12, MMA, homocysteine, B12 binding. Get these tests done before taking high dose B12 supplements. Don't let a doctor give you 1 shot to see if it helps---- and never do the tests. Tests have to be done before shots and high-dose oral B12. It would be a good thing if it was B12 deficiency--- because there is a cure and a treatment. Your doctor also should rule out thyroid disorder. Sally
    Anonymous 42789 Replies Flag this Response
  • Haven't been invited to speak at any conferences, but would gladly do so if invited.... Discussing B12 deficiency and everything in the book would be an excellent conference for physicians and other health care professionals .... If you know of anyone interested, they can contact my publicist at (800) 497-4909 . Hi Sally, I recently joined & have read most of your book in an attempt to educate myself so that I can: 1) advocate for my 82yr old father who has been very ill for over 2 yrs. and slipping gradually before that. 2) learn how to advocate for your information & book, and 3) try to credibly, intelligently & tactfully approach the MDs who are responsible for missing this B12 help in my once wonderful, intelligent father's life thus far. To that end, QuillDriver Bks was very kind in giving me a disc. for 25 books which I intend to send out to everyone involved, but would like advice lst & an organized approach in how to be a proper B12 PR / Patient Advocate. I'd love to set up a number of lectures for you on East Coast/New England if I knew how to proceed-- I can approach your publicist /would need further suggestions... tell me, what can I do? I feel very determined about this.... I think it is utterly criminal what is happening in this epidemic of missed B12 deficiency diagnoses, what has happened to my father & so many others. This post will be long, I'm sorry. Should I email you privately rather than take up too much space? I'd like your feedback v. much, as I'm convinced that B12 is the main issue, a mess of an undiagnosed/ misdiagnosed situation... Here are the facts as I know them, taken from an attending Family Practice Dr's & a GeriatricPsychiatrist's reports. The psychiatrist had been chosen in 2005 by my father & stepmother to be his main attending physician. Psychiatrist's assessment & plan 03/06/07:"An 82yr old man w/ history of depression now presents w/depression, withdrawn affect & vegetative symptom of anorexia w/over 10lb weight loss. Labs are signif. for a mild anemia, low normal folate + B12. Patient appears undernourished. I suspect pt's anemia is multifactorial w/component due to nutrit.def. 2nd to anorexia from depression. I see no medical contraindic. in patient receiving meds already prescribed incl. Megace, Wellbutrin, Xanax, Ambien, Namenda, Aricept, Prozac, Zocor & Synthroid. Nutrition should eval. to see if benefit from any supplementation. If pt. observed to have difficulty ambulating, recommend occ. & phys. therapy evaluate for ambulation safety. His complaints of dizziness may be due to weakness and debilitation. Dr. F. neurol. will be also evaluating for any neurol. component to pt's symptoms."NO mention in earlier reports re anemia, no suggestion for B12, or follow-up w/ "Nutrition".] "Past surgical history: pyloric stenosis repair 78 yrs ago, then sounds like an incisional hernia in approx. 1993, then a small bowel obstruction secondary to adhesions, and in 2000 laparoscopic lysis of adhesions. Prostate cancer treated w/cesium implants 1999; pronounced kyphoscoliosis; constant pain in right upper quadrant (at lower rib) for over 30 yrs" . Bladder cancer treated with KGW? washes 2005-6 at which time it seemed he became much sicker quickly, but urologist says no connection. Test results early March '07: CBC: WBC 4.7L/ RBC3.67L/ HGB 13.1L/ HCT 36.8L /MCV 100.5H/ MCH 35.7H/ MPV 7.2L/ Granulocytes 49.5 ...etc. Metabolic Chem: Glucose 109/BUN 16/ creatinine 0.9/ cholesterol 135/ total protein 5.3, alb 3.5/ AST 18/ TSH 0.1, freeT4= 1.01/ VitB12= 303, folate 12/ potass. 3.8/ chloride 110/ calcium 8.8L Our personal experience of him is as follows: For about a year, Dad's been now in bed 22 of 24 hrs, a virtual invalid; in pain from the 30yr mystery ailment in his right side; memory loss/"dementia"; depression, some suicidal ideology, a few hallucinations last yr; cold all the time; neuropathy; 10-25lb weight loss over last 2 yrs; lesions in mouth & gums> attrib. to denture problems (but no beefy red tongue I know of); constipation treated w/meds; an indescribable dizziness/ vertigo/ brain?-something; increasing weakness, not surprisingly; motor problems> a slight shuffle; small tremor sometimes in hand, worse in legs; 2 recent falls in the bathroom, & a very,very bad fall over a yr ago in a restaurant parking lot attributed they think to a raised edge on walkway, or possibly they wonder, a TIA; 3 bouts of weeklong (!)admission into the Senior Behavior Center of Sharon (CT) Hospital for observation, tests, feeding; MRI's show small white matter abnormalities. In short, a total failure to thrive, and they all have given up, call him a total mystery!Over 2 yrs, nothing but dead ends from his MD's, every CT, MRI, every test (no tests you suggest were given exc. B12/folate only a couple times), the latest push from his psychiatrist was for ECT (shock treatment) for his depression & malaise! His symptoms have not followed the Alzheimer or LewyBody Disease path, so they finally ruled that out.He's been too sick&weak to go very far or try 'every dr in the book', though we kids have tried to push for 2nd opinions & Geriatric 'experts' in NYC etc. The problem/resistance is as much between my dad/stepmom, as between the local unknowing medical Drs. Now new Dr wants to focus on Parkinson's, Lyme disease, & hopefully the diabetes. Still not>>B12! :mad: Truly criminal, don't you think? Finally last month we got them to allow a naturopathic Dr to see him; and, based only on his high MCV/MCH etc hematologies, she immed. diagnosed severe B12 def., pernicious anemia, & urged B12 shots ASAP, as well as bringing the untreated diabetes again to light. W/o further testing lst, she started him 3-4 wks ago on: FolaPro (5-methyl tetrahydrofolate) 1/day; Activated B6 as P5P50, 2/day; Super B-complex, 2/day; and recommended B12 IM, 1cc/day for at least 7 days,(perhaps even 14 in his case) and then 1 inject./wk for a month, etc. At this point, I went into OT intensive study, learning from this site, others, +your book that he indeed has virtually every symptom for B12 defic., PA, whether irreversible over such a long time is anyone's guess. By last Mon, he was up & the best I had seen him in ages, had even gone to 2 sessions of exercise class!! after 3 wks of the above supplements. However, very unfortunately, that Mon. pm I upset my father & stepmom terribly with an over the top outburst of anger, frustration & too much wine to boot, at being called presumptuous, hysterical, no credentials, no knowledge, & their also saying the Naturopath has no real med.credentials, "how can we poss. know he's better just because of her advice", etcetc.They would never consider a malpractice suit at this point. So now he has suffered a real setback & is back in bed fulltime>my fault. My whole rest of family has put the lid on any discussion of or further meddling into his health, & we are having to leave him & stepmom to their own devices & MD's. I've been forbidden to interfere any further. I did try to lobby for a urine sample to send to Norman Labs for the uMMA before the shots were started (still don't think they even yet have been!), but was unable to accomplish due to circumstances. The bloodwork just taken did include Hcy due to recom. of the naturopath, tho Dr said it won't be accur. bec. of supplements; also testing for Lyme Western bloc, lead, A1C, folate, urine culture. Of course MD didn't recommend the MMA test or acknowledge anemia. And when the test results come back, they won't be interpreted correctly on top of everything else bec. of what you have spelled out as the skewing of results.Can you believe this story?? ....unfortunately, I'm sure you can... Perhaps I'm overly biased by believing in a naturopath's abilities, by my internet studies & am presumptuous or wrong, so that's why your feedback would be so appreciated & timely at this juncture, if poss. I realize time is of essence for Dad's proper, continued treatment & then he might just have a chance.... but we are in a predicament here of everyone's making, my hands are now tied, I don't know what to do. Let it go? Pray & trust that the MD's will miraculously 'get it' & do the right thing in the next few weeks? Figure it's just dad's karma to die like this? Hope that if he ever gets the B12 shots he'll rally so noticeably that no one can deny that's all it ever was? I don't yet have an organized plan of how to proceed w/ all the books I ordered, but do plan to send them around to family&friends, hope to heck they'll read, & also would like to anonymously send one to each MD involved in the care of my father, hoping THEY'll read it! But seriously, would most like to do in an appropriate manner ASAP so as to really reach the most relevant health professionals, give the message & information the best chance at being heard & believed to make real change happen. So as not to ramble further & apologize++:( for length, I would most appreciate feedback/suggestions. With blessings & many thanks ~your book & this forum has really made a difference~ nlbstj
    NlbStJ 4 Replies Flag this Response
  • This is a most interesting site about B-12. This entry may explain why my daughter's doctor found her B-12 test to be within normal range. She had been B-12 dependant for many years at that time. When she was nine years old in 1964 she showed signs of being disturbed. I gave her 25 mcg a day of Cobalamin Concentrate for two weeks and she became like her old self. When the store change brands she became disturbed again within two weeks. I checked the bottle, and found that the B-12 was 25 mcg of Cyanocobalamin. When we found a new source of Cobalamin Concentrate, she once again responed positively to it in two weeks.She may have taken a B-12 table prior to her visit to the doctor, which would explain why her deficency did not show up.She is still taking Cobalamin Concentrate and functions quite normally. I have sent her many bottles of it over the years when I found a new source which had the Cobamamin Concentrate in whatever mcg it contained.Dorothy Hi Dorothy, This is very interesting about your 9 year old daughter in 1964. I have never heard of Cobalamin Concentrate. Could you tell me what company you use to use (and does your daughter still take it)-- and what dose? You stated the 25mcg worked--- was this in a liquid form? Was the cobalamin concentrate methyl-, cyano-, adenosyl-, or hydroxo- B12--- or was it a combination of the different B12 forms? When you say she was "disturbed", could you describe her behavior? Was she diagnosed with a mental illness? Was she ever tested for B12 deficiency? Did you put her on this yourself--- or did her pediatrician recommend it? The reason I am asking--- is because autistic children could be viewed as "disturbed" and B12 deficiency and inborn errors MUST be ruled out in every "autistic" child. But the medical community--- is not up to date regarding this, hence most children are not tested--- and many could be helped and are not--- but left in their own worlds. This is another error the medical and health care community is making--- the connection between autism and vitamin B12. In our book, we expose how many children diagnosed with autism---may have a B12 deficiency or inborn error of B12 metabolism--- and every child diagnosed with autism, PDD, or Asperger's must have proper testing (MMA, homocysteine, B12, B12-binding) before B12 given, and then a trial of high dose B12 should be given. As you are probably aware B12 deficiency causes numerous mental signs and symptoms which has been well-documented in the medical literature for over a century. (confusion, irritability, depression, psychosis, dementia, poor-memory, foggy thinking, anxiety, suicidal ideations, etc.). What clinicians are failing to realize--- is that B12 causes brain atrophy, can cause dementia and poor memory--in adults we call this dementia. In infants and children, it has been documented that developmental delay, speech problems, learning difficulties, low IQ, mental retardation and even death can result from an untreated B12 deficiency. We don't call geriatrics "autistic" and we don't label children as "demented or senile"--- but classify them somewhere on the PDD scale (mild to severe). I have seen children diagnosed with autism that really had a B12 deficiency---proven with tests--- and excelled once B12 therapy started. Other clinicians and physicians have documented this. Therefore, it would stand to reason that every child diagnosed with autism--- must be screened and a therapeutic trial of B12 started. But this is NOT happening. It is absurd! Recently the governement was given large sums of money to research in finding a cause--- yet no one is broadcasting the connection of the role B12 plays. 60 minutes, The View, Oprah, NBC & ABC Evening News all had specials on autism--- and not once was B12's role mentioned! All parents have a right to know this information. Most people don't know our book reveals this--- and there is a chapter regarding children and B12 deficiency, and autism. What I am trying to point out to the readers--- is that in 1964 your daughter was "disturbed" and responded well to vitamin B12. Please people reading this--- if your child has been diagnosed with autism--- or is having symptoms of autism, language delay, speech problems, seeming like they are in their own world, socialization problems---- you must have your child tested first. Even if the child comes back negative--- a trial of B12 is recommended. The reason the child needs to be tested is because it will dictate the child's treatment, will give an explanation for the developmental delay, and it will help other children and set a protocol to help others. (it may show the children who come back + for B12 deficiency, respond better than the children who do not). In one study, 20% of children tested for B12 deficiency (who had "autism")-- had an elevated MMA-----which clearly means they had a functional B12 deficiency causing their behavior. Another 5% had an elevated homocysteine. This is significant. I have personally seen a 4 1/2 year old boy respond from vitamin B12 injections. There are many reasons children can be B12 deficient, and this needs to be discussed in front of a national audience. It is very interesting---- that the University of California Davis--- is doing a study on children diagnosed with autism between the ages of 3 and 8--- and are giving methyl-B12 injections, it started in 2005. This is the same institution that when my book was sent from Vanderbilt University for review by medical review (for they were also interested in publishing our book), laughed at the autism connection--- and thought it was absurd. Not so absurd is it-- or they would not be studying it now! I would not budge on autism, Alzheimer's, or MS (sometimes misdiagnosed-- where the patient really has a B12 deficiency or an inborn error of B12 metabolism)---therefore I chose a different publisher (Quill Driver Books). Numerous children have been helped. What we don't know, is if transdermal patches could be used verses injections, and if high-dose chewable or B12 lozenges could be used---- and what the best form would be. Others report only methyl-cobalamin can be used. But the boy I witnessed come out of his fog-- and autistic behavior was on hydroxocobalamin injections. A year after our book came out, a nurse from Wisconsin reported her 7 year old son (whose doctors, social workers, trainers---advised her to institutionalize him) for he would severely injure himself or others---- dramatically changed after the mom gave cyanocobalamin chewable 3,000 mcg three times a day-- took about 2 weeks. Unfortuantely she did not test the child before doing this---- which would really help researchers and others. Other researchers state that only the methyl-B12 can be used. Obviously this is not the case. This role B12 plays in helping autistic children must be discussed and documented--- to help society as a whole. It is the only responsible thing to do---- what good is all this information tucked away in our book? There is a critical window of opportunity to treat B12 deficiency in children or adults or permanent injury will result. Sally
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  • Hi Sally, I recently joined & have read most of your book in an attempt to educate myself so that I can: 1) advocate for my 82yr old father who has been very ill for over 2 yrs. and slipping gradually before that. 2) learn how to advocate for your information & book, and 3) try to credibly, intelligently & tactfully approach the MDs who are responsible for missing this B12 help in my once wonderful, intelligent father's life thus far. To that end, QuillDriver Bks was very kind in giving me a disc. for 25 books which I intend to send out to everyone involved, but would like advice lst & an organized approach in how to be a proper B12 PR / Patient Advocate. I'd love to set up a number of lectures for you on East Coast/New England if I knew how to proceed-- I can approach your publicist /would need further suggestions... tell me, what can I do? I feel very determined about this.... I think it is utterly criminal what is happening in this epidemic of missed B12 deficiency diagnoses, what has happened to my father & so many others. Psychiatrist's assessment & plan 03/06/07:"An 82yr old man w/ history of depression now presents w/depression, withdrawn affect & vegetative symptom of anorexia w/over 10lb weight loss. Labs are signif. for a mild anemia, low normal folate + B12. Patient appears undernourished. I suspect pt's anemia is multifactorial w/component due to nutrit.def. 2nd to anorexia from depression. I see no medical contraindic. in patient receiving meds already prescribed incl. Megace, Wellbutrin, Xanax, Ambien, Namenda, Aricept, Prozac, Zocor & Synthroid. Nutrition should eval. to see if benefit from any supplementation. If pt. observed to have difficulty ambulating, recommend occ. & phys. therapy evaluate for ambulation safety. His complaints of dizziness may be due to weakness and debilitation. Dr. F. neurol. will be also evaluating for any neurol. component to pt's symptoms."NO mention in earlier reports re anemia, no suggestion for B12, or follow-up w/ "Nutrition".] For about a year, Dad's been now in bed 22 of 24 hrs, a virtual invalid; in pain from the 30yr mystery ailment in his right side; memory loss/"dementia"; depression, some suicidal ideology, a few hallucinations last yr; cold all the time; neuropathy; 10-25lb weight loss over last 2 yrs; lesions in mouth & gums> attrib. to denture problems (but no beefy red tongue I know of); constipation treated w/meds; an indescribable dizziness/ vertigo/ brain?-something; increasing weakness, not surprisingly; motor problems> a slight shuffle; small tremor sometimes in hand, worse in legs; 2 recent falls in the bathroom, & a very,very bad fall over a yr ago in a restaurant parking lot attributed they think to a raised edge on walkway, or possibly they wonder, a TIA; 3 bouts of weeklong (!)admission into the Senior Behavior Center of Sharon (CT) Hospital for observation, tests, feeding; MRI's show small white matter abnormalities. In short, a total failure to thrive, and they all have given up, call him a total mystery!Over 2 yrs, nothing but dead ends from his MD's, every CT, MRI, every test (no tests you suggest were given exc. B12/folate only a couple times), the latest push from his psychiatrist was for ECT (shock treatment) for his depression & malaise! His symptoms have not followed the Alzheimer or LewyBody Disease path, so they finally ruled that out.He's been too sick&weak to go very far or try 'every dr in the book', though we kids have tried to push for 2nd opinions & Geriatric 'experts' in NYC etc. The problem/resistance is as much between my dad/stepmom, as between the local unknowing medical Drs. Now new Dr wants to focus on Parkinson's, Lyme disease, & hopefully the diabetes. Still not>>B12! :mad: Truly criminal, don't you think? Finally last month we got them to allow a naturopathic Dr to see him; and, based only on his high MCV/MCH etc hematologies, she immed. diagnosed severe B12 def., pernicious anemia, & urged B12 shots ASAP, as well as bringing the untreated diabetes again to light. W/o further testing lst, she started him 3-4 wks ago on: FolaPro (5-methyl tetrahydrofolate) 1/day; Activated B6 as P5P50, 2/day; Super B-complex, 2/day; and recommended B12 IM, 1cc/day for at least 7 days,(perhaps even 14 in his case) and then 1 inject./wk for a month, etc. At this point, I went into OT intensive study, learning from this site, others, +your book that he indeed has virtually every symptom for B12 defic., PA, whether irreversible over such a long time is anyone's guess. By last Mon, he was up & the best I had seen him in ages, had even gone to 2 sessions of exercise class!! after 3 wks of the above supplements. The bloodwork just taken did include Hcy due to recom. of the naturopath, tho Dr said it won't be accur. bec. of supplements; also testing for Lyme Western bloc, lead, A1C, folate, urine culture. Of course MD didn't recommend the MMA test or acknowledge anemia. And when the test results come back, they won't be interpreted correctly on top of everything else bec. of what you have spelled out as the skewing of results.Can you believe this story?? ....unfortunately, I'm sure you can... Perhaps I'm overly biased by believing in a naturopath's abilities, by my internet studies & am presumptuous or wrong, so that's why your feedback would be so appreciated & timely at this juncture, if poss. I realize time is of essence for Dad's proper, continued treatment & then he might just have a chance.... but we are in a predicament here of everyone's making, my hands are now tied, I don't know what to do. Let it go? Pray & trust that the MD's will miraculously 'get it' & do the right thing in the next few weeks? Figure it's just dad's karma to die like this? Hope that if he ever gets the B12 shots he'll rally so noticeably that no one can deny that's all it ever was? I don't yet have an organized plan of how to proceed w/ all the books I ordered, but do plan to send them around to family&friends, hope to heck they'll read, & also would like to anonymously send one to each MD involved in the care of my father, hoping THEY'll read it! But seriously, would most like to do in an appropriate manner ASAP so as to really reach the most relevant health professionals, give the message & information the best chance at being heard & believed to make real change happen. So as not to ramble further & apologize++:( for length, I would most appreciate feedback/suggestions. With blessings & many thanks ~your book & this forum has really made a difference~ nlbstj[/quote Yes, I would love to work with you to educate others regarding vitamin B12 deficiency. Contact Andrea Wright at Quill Driver Books (800) 497-4909 and she will put you in touch with me. Yes, unfortuantely it sounds like your dad had a B12 deficiency for some time. Simple clues (low range 303pg/ml, elevated MCV)----- even if he didn't have these with all his symptoms---this should of led them to run a MMA--- I am really shocked how the medical community does not know about MMA. Hcy is nice to test for too--- but it can also be elevated in folic acid deficiency, B-6 deficiency, renal failure, hypothyroidism. Because your dad is malnourished--- his B12 of 303 could be at this level if he ever got MVI in an IV solution for nourishment. If they ever gave him a multi-vitamin the B12 test can pick up analogs--reporting out a higher serum B12 level. (as you have read--many factors can alter this). Because your dad had all the recent B12--- his uMMA test will be altered. It is proof that your father responded to the B12--- shows that the form he was given--- he responded to---- yes a round of shots would still be in order--- along with the high-dose supplements in-between. Perhaps you could send your dad-- or let him read that B12 deficiency--- is a disorder that MD's should test for and treat. Remind him of the epidemic in the late 19th century and early 20th century where people actually died from this disease process--- that they even won the Nobel Prize in medicine and physiology for it's discovery by Minot, Murphy, and Whipple. This isn't a holistic doctor's diagnosis or voo-doo---just a disorder that has been overlooked, ignored, and commonly misdiagnosed--- that doctors are failing to look for, and often times are barking up the wrong tree--- and placing patients on numerous meds, compounding their problem--- and allowing the deficiency to worsen causing injury and/or death. Looking forward to talking with you and working with you! You could also send your dad and step-mom an excellent article in a recent medical journal called "Geriatrics" that made the cover discussing vitamin B12 deficiency (March 2003). Too bad most of the medical community didn't read this--- it is an excellent overview---it may prove to your dad or step-mom---- that this is real and all MD's must get reeducated. This really is a public health issue----they should be doing MMA's at Project Healthy Living or Health-O-Rama's. Medicare and insurance companies pay for MMA testing just like any other lab test---that the doctor deems needs to be done. The problem is the medical community needs to be reeducated. There should be clinics to test people who are in need --- in the long run--- it would be saving billions of dollars and more importantly millions of lives. Sally
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  • I am a fatigued hypothyroid being treated with T4, who has B12 and ferritin concerns. After reading around trying to solve the long-standing mystery of my unrelenting fatigue, I saw that many hypos have anemia, deficiency or depletion concerns. I decided to start supplementing both b12 and iron. After a month of sublingual treatment (5000mcg/d sometimes 10,000), my serum b12 went from 414 (range 193-982) to 1875 (yes 1875) (range 243-894). I had a few years earlier been 287 (range 180-900) so I knew there was a problem here. My father, grandmother and sister all rec b-12 shots, but were/are diagnosed with anemia. I don't really feel much better, only as if I am tired and had too much coffee if anything - not a nice energy. I compare this to the few times in my past that I was given a b-12 shot by a dr upon request, but as a one time only deal..."You are not anemic, so you don't really need it..." On those occasions, I felt really well, with a strong sense of well-being. Of course, I thought I was imagining it, esp after all the looks of sceptisim from drs over the years given my hypo complaints. I wondered if it is really valid that a sublingual treatment, as I have been doing, is the same as IM injections? I have not had an MMA test as no one seems to offer it or even know what it is. I am wondering from your experience, if in some the seeming qualitative difference btwn IM and sublingual is real, and if so, do you think I should pursue the MMA (with my own money of course!). Incidentally, would my low ferritin 18 (range 9-120) be impeding any progress on the fatigue front? Also, of note, my folate was rather in the high range - ">15" (range 3-17) Finally, strangely, my MCV has always been the lowest in any range if not below sometimes, and I realize that typcially the MCV is high in pernicous anemia and low in iron deficiency anemia. Just another mystery I guess. Thanks;) You really should get the B12 shots. I myself have tried he methyl-B12 SL---- and really feel a difference in the shots verses the lozenges. Since your other family members have this condition--- you may too. Your MMA will be normal--- and no concern that the B12 is high in the blood--- the question is --- is it passing through the blood-brain barrier. Your ferritin of 18 is low--- which would make sense that your MCV is low--- which would indicate an iron deficiency. You may not have enough hydrochyloric acid which is making you low in B12 and iron. You should ask for a serum gastrin ---- which will be elevated if you have poor stomach acid. Yes, see what your serum iron is--- sounds like you need to start on iron (since your ferritin is 18 and your MCV is low), and switch to the B12 shots and see if you feel a difference. Ask for the hydroxocoblamin---- and learn how to self inject or a family member to learn--- and that way maybe your doctor will comply more--- if they don't want you coming in to the office--- taking time away from other patients. Iron deficiency will make you fatigued and sometimes real cold hands and feet. Make sure your thyroid levels are where they should be---- and see if any other autoimmune diseases are present (your doctor could test for). I think with all the B12 you have been taking--- the MMA will be normal, but the injections for some reason people feel a great difference (I do--- and if I felt the same with lozenges that I do with shots--- of course I would stick with the lozenges---- but I do not. You did have a low B12 long ago and have a thyroid disorder--- so you may have autoimmune pernicious anemia. You see, that is the problem--- we may make the blood look good on paper taking lozenges--- but what is the true clinical response and effect in people--- the injections are far more superb in many people. This is not to say that others will not do well on B12 lozenges--- it may depend on why they have a deficiency. And even though doctors may say it is the placebo effect---- they have no background or personal knowledge to make that assumption or comment. When you look at it --- wouldn't we rather have people taking B12 injections for chronic pain for neuropathy or depression--- than having them get addicted to narcotics for chronic pain, or even have a substance abuse problem--- let alone having them driving in society--- impaired--- causing additional problems--motor vehicle accidents. The medical community is so miserly when it comes to B12--- but no problems pushing anti-depressents, pain meds, anti-anxiety agents, expensive drugs for neurogenic pain. But when a patient asks for B12 or a trial--- like they are asking for them to brake the law or something---- it is absolutely backwards. (Let alone the medical community is not testing people properly when patients present with B12 deficiency signs and symptoms). Sally
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  • Thank you for your response. It is unfortunate that the medical literature has pointed to sublingual b12 as a supplement to IM b12 - my dr will likely not be persuaded, especially since my serum b12 level is so high "It shows your body can absorb b12". Well, I was thinking of an integrative medical practice as my next alternative. I am still trying to get my thyroid levels straightened out, I don't know if T4 only supplementation will be the solution. I was interested to hear that people do feel a differnce with the IM method with hydroxocoblamin. Could you tell me is there a method to measure the actual way a patient is utlitizing the b12, related to your statement regarding "passing through the blood-brain barrier"?Incidentally, I did seek out the advice of a hematoligist. I knew if might be a losing proposition, but I had read a small bit (too complex for me) on endocrine disorders and anemia. I was told there was "nothing wrong with my blood" and that if I was fatigued, it must be depression. When I balked at this, stating that I had sudden episodes of total exhaustion midway during my (very infrequent) excercise routines, then the conversation swithced to chronic fatigue, and he recommended I look into it, but I knew that he did not really take CFS seriously.I agree with you about the backwards nature of medical practice in this and other instances. Why drs would prescribe painkillers, psych meds and let some suffer with "old age" confusions etc when the answer is right in front of them, is scary, as is the rigid aherence to lab values "you are in the range, there is nothing wrong".Thanks again for your advice. Will try for the IM shots and work on getting the ferritin up.
    Nuala916 4 Replies Flag this Response
  • Hi Sally, I sure hope I am posting this in the right place. I was doing so much better but confusion and forgetfullness still bother me at times. Back in 2002 I was having trouble with stumbling every so often, bouts of forgetfullness, tingling sensations in feet and legs, among other conditions I cant remember. I was sent to the finest Doctors in Memphis Tn where every kind of test imaginable was performed on me, but no check of B12 deficiency. They finally told me I had dementia and a demyelating disease of the nervous system in which the myelin is being damaged, and they didnt know why, but they did know there was nothing they could do for me. They also mentioned osteoperosis, and a few other possibilities I cant remember right now.As a few years passed and the stumbling now turned into very frequent falls, bouts of depression, memory loss, difficulty in thinking clearly, tingling in hands and feet...among other conditions.....I was finally sent to St Louis MO, Barnes Jewish Hospital/Washington Medical Center to some of the best "MOVEMENT DISORDERS" doctors in the world. To make A long story short...they first thought I had MS type symptons,.....then after a few more visits they said I had Parkinson like symptons...THEN FINALLY and after several more visits and a few more "YOU MIGHT HAVE THIS OR YOU COULD HAVE THAT"..................FINAL DIAGNOSIS was a very, very rare neurological disorder that was causing my brain to degenerate and deteriorate, know to the medical field as CORTICAL BASAL DEGENERATION. There is so little known of this disease, I was told, but the doctors prescribed one Sinemet Tablet 25-100 MG three times a day. Since first diagnosis in 2005, everytime I would go back to St Louis for follow up visits, they would tell me...start taking one more Sinemet Tab 3 times daily. I am now up to 3 1/2 Sinemet tab 25-100mg per day. My symptons havent really changed that much, but they also prescribed me with physical therapy three x a week, occupational therapy three x a week, and speech therapy 3 x a week. The physical therapy and occupational therapy are very strenuous lasting three to four hours a day, plus when at home I am exercising constantly. I think this was all helping for a while but I have noticed that the "pins and needles" tingling, vibrating feeling in feet and hands is getting worse...my imbalance and gait is worsening and it is hard to maintain my balance when walking......I tire quite easily, ...my memory loss is not improving,I stumble constantly....I fall frequently, even while using my walker....when I get cold I CANNOT MOVE, as though I am frozen to a spot......in the darkness I fear moving around because it seems as my senses dissipate in darkness...I have noticed the bouts of depression are TRYING to come back...but I am fighting this very hard. I was always getting compliments on my handwriting, now it is terrible....My speech is starting to sound terrible, sometimes being hard to make you understand what I am saying. Gosh Sally, even after all of this, I am confident that I will get better. A while back I was reading about CBD in the wemove.org forums and luckily and by the grace of God, a woman e-mailed me about my symptons that were so much like the ones her husband was experiencing. Through our e-mails back and forth, she finally introduced me to your book, and what all you were doing for her husband. It was as tho an angel had been sent to me. I have tried everything known to help my body try to get better, up to and including building my own machine so I could self induce my own "SHOCK THERAPY" but I have since quit that so we wont go into details. She told me of your book, how much your expert advice was helping her husband. She told me of the B 12 defeciencies. With her advice, I did have a B 12 level tested . It came back B12 level was 343 and folic acid was 14.88 which they said was normal. This was all done drawing blood. Before I forget I need to say this. For the past year and a half, my diet consists of very little red meat,actually live off of potato chips, coca cola, popcorn, cheese and pop tarts. For the past twenty five years or so I probably averaged consuming at least 50 or more rolaids or tums monthly, sometimes it could be even fifteen to twenty per day. Yes, I did say...sometimes 15 or 20 per day.When I was diagnosed with CBD, my doctors told me it was a terminal illness that usually destroys the body in a few years. Beings I am frugal, when I was told that, I cancelled all my insurance policys, and relied only on Medicare to foot my bills. Little did I kow, but Medicare does not cover my therapys, which for instance, I paid out of my pocket almost $1500 for last months therapies....that did not include the doctors I see on a monthly basis, and my therapy started over a year ago. It has come the time that I need to be a little more conservative with my money,but I will spend it all if I need to, just so I could play in the park for just one day with my grand children.It was last November 15, 2006 when I had the B 12 level draw. Is it still alright or shuld I have another one? What I wish to do is to have the comple tests for B 12 deeficiency done. Could you please walk me through the step by step method of this. Do I do the Serum Vitamin B12 test first, then the Methylmalonic Acid (MMA) test,and follow up with the Homocysteine (Hey) test? Is the MMA the same as theUMMA? If you could walk me through this step by step I would really appreciate it.My comprehension isnt all that great anymore, but I would appreciate a simple step by step information I can relay to my doctor. I bought your book under the advice of my friend Linda, who also by the way has consulted in you, but I read and sometimes comprehend, and sometimes dont comprehend to well. Let me say thanks to you for the great works you are doing and have done in the past on your research of B12. All I would like to do before I die is to have one HEALTHY day with my grand children, to play ball, slide down the slide, just whatever they wanted, and just for one day. I guess I should be satisfied with still having the ability to drive to their home, but I still wish I could join in their games for just ONE day. Thank you Sally and God Bless Rainn
    rainnmann 1 Replies Flag this Response
  • Thank you for your response. It is unfortunate that the medical literature has pointed to sublingual b12 as a supplement to IM b12 - my dr will likely not be persuaded, especially since my serum b12 level is so high "It shows your body can absorb b12". Well, I was thinking of an integrative medical practice as my next alternative. I am still trying to get my thyroid levels straightened out, I don't know if T4 only supplementation will be the solution. I was interested to hear that people do feel a differnce with the IM method with hydroxocoblamin. Could you tell me is there a method to measure the actual way a patient is utlitizing the b12, related to your statement regarding "passing through the blood-brain barrier"?Incidentally, I did seek out the advice of a hematoligist. I knew if might be a losing proposition, but I had read a small bit (too complex for me) on endocrine disorders and anemia. I was told there was "nothing wrong with my blood" and that if I was fatigued, it must be depression. When I balked at this, stating that I had sudden episodes of total exhaustion midway during my (very infrequent) excercise routines, then the conversation swithced to chronic fatigue, and he recommended I look into it, but I knew that he did not really take CFS seriously.I agree with you about the backwards nature of medical practice in this and other instances. Why drs would prescribe painkillers, psych meds and let some suffer with "old age" confusions etc when the answer is right in front of them, is scary, as is the rigid aherence to lab values "you are in the range, there is nothing wrong".Thanks again for your advice. Will try for the IM shots and work on getting the ferritin up.Probably the only way is by testing the B12 in the cerebral spinal fluid---- they have done this is research labs and have read articles where they have done this--- but it is very rare. You try the B12 shots and see if they work for you. Your doctor shouldn't really fight with you on this--- for they use B12 shots for chronic fatigue syndrome--- and it helps a lot of people. My question is I wonder how many people with CFS may actually have had a true B12 deficiency--- and therefore were significantly helped with the shots. This is why testing is helpful before shots or self therapy is done taking high dose oral of lozenges of B12.Sally
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  • Hi Sally, I sure hope I am posting this in the right place. I was doing so much better but confusion and forgetfullness still bother me at times. Back in 2002 I was having trouble with stumbling every so often, bouts of forgetfullness, tingling sensations in feet and legs, among other conditions I cant remember. I was sent to the finest Doctors in Memphis Tn where every kind of test imaginable was performed on me, but no check of B12 deficiency. They finally told me I had dementia and a demyelating disease of the nervous system in which the myelin is being damaged, and they didnt know why, but they did know there was nothing they could do for me. They also mentioned osteoperosis, and a few other possibilities I cant remember right now.As a few years passed and the stumbling now turned into very frequent falls, bouts of depression, memory loss, difficulty in thinking clearly, tingling in hands and feet...among other conditions.....I was finally sent to St Louis MO, Barnes Jewish Hospital/Washington Medical Center to some of the best "MOVEMENT DISORDERS" doctors in the world. To make A long story short...they first thought I had MS type symptons,.....then after a few more visits they said I had Parkinson like symptons...THEN FINALLY and after several more visits and a few more "YOU MIGHT HAVE THIS OR YOU COULD HAVE THAT"..................FINAL DIAGNOSIS was a very, very rare neurological disorder that was causing my brain to degenerate and deteriorate, know to the medical field as CORTICAL BASAL DEGENERATION. There is so little known of this disease, I was told, but the doctors prescribed one Sinemet Tablet 25-100 MG three times a day. Since first diagnosis in 2005, everytime I would go back to St Louis for follow up visits, they would tell me...start taking one more Sinemet Tab 3 times daily. I am now up to 3 1/2 Sinemet tab 25-100mg per day. My symptons havent really changed that much, but they also prescribed me with physical therapy three x a week, occupational therapy three x a week, and speech therapy 3 x a week. The physical therapy and occupational therapy are very strenuous lasting three to four hours a day, plus when at home I am exercising constantly. I think this was all helping for a while but I have noticed that the "pins and needles" tingling, vibrating feeling in feet and hands is getting worse...my imbalance and gait is worsening and it is hard to maintain my balance when walking......I tire quite easily, ...my memory loss is not improving,I stumble constantly....I fall frequently, even while using my walker....when I get cold I CANNOT MOVE, as though I am frozen to a spot......in the darkness I fear moving around because it seems as my senses dissipate in darkness...I have noticed the bouts of depression are TRYING to come back...but I am fighting this very hard. I was always getting compliments on my handwriting, now it is terrible....My speech is starting to sound terrible, sometimes being hard to make you understand what I am saying. Gosh Sally, even after all of this, I am confident that I will get better. A while back I was reading about CBD in the wemove.org forums and luckily and by the grace of God, a woman e-mailed me about my symptons that were so much like the ones her husband was experiencing. Through our e-mails back and forth, she finally introduced me to your book, and what all you were doing for her husband. It was as tho an angel had been sent to me. I have tried everything known to help my body try to get better, up to and including building my own machine so I could self induce my own "SHOCK THERAPY" but I have since quit that so we wont go into details. She told me of your book, how much your expert advice was helping her husband. She told me of the B 12 defeciencies. With her advice, I did have a B 12 level tested . It came back B12 level was 343 and folic acid was 14.88 which they said was normal. This was all done drawing blood. Before I forget I need to say this. For the past year and a half, my diet consists of very little red meat,actually live off of potato chips, coca cola, popcorn, cheese and pop tarts. For the past twenty five years or so I probably averaged consuming at least 50 or more rolaids or tums monthly, sometimes it could be even fifteen to twenty per day. Yes, I did say...sometimes 15 or 20 per day.When I was diagnosed with CBD, my doctors told me it was a terminal illness that usually destroys the body in a few years. Beings I am frugal, when I was told that, I cancelled all my insurance policys, and relied only on Medicare to foot my bills. Little did I kow, but Medicare does not cover my therapys, which for instance, I paid out of my pocket almost $1500 for last months therapies....that did not include the doctors I see on a monthly basis, and my therapy started over a year ago. It has come the time that I need to be a little more conservative with my money,but I will spend it all if I need to, just so I could play in the park for just one day with my grand children.It was last November 15, 2006 when I had the B 12 level draw. Is it still alright or shuld I have another one? What I wish to do is to have the comple tests for B 12 deeficiency done. Could you please walk me through the step by step method of this. Do I do the Serum Vitamin B12 test first, then the Methylmalonic Acid (MMA) test,and follow up with the Homocysteine (Hey) test? Is the MMA the same as theUMMA? If you could walk me through this step by step I would really appreciate it.My comprehension isnt all that great anymore, but I would appreciate a simple step by step information I can relay to my doctor. I bought your book under the advice of my friend Linda, who also by the way has consulted in you, but I read and sometimes comprehend, and sometimes dont comprehend to well. Let me say thanks to you for the great works you are doing and have done in the past on your research of B12. All I would like to do before I die is to have one HEALTHY day with my grand children, to play ball, slide down the slide, just whatever they wanted, and just for one day. I guess I should be satisfied with still having the ability to drive to their home, but I still wish I could join in their games for just ONE day. Thank you Sally and God Bless RainnHello Rainn,Yes -----you immediately need to have the MMA, homocysteine, and repeat the serum B12 test. A serum B12 of 343 is in the low range-- and since it has been 5 months repeat it. If you are over 65--- Medicare should be paying for your lab tests. In any event you have to get these done pronto.Please get these tests done before taking any B12 on your own.Your signs and symptoms are describing B12 deficiency---- and that is why you need to be properly tested for it--- and ruled out. I am SHOCKED that your doctors have not tested you! But then again, I am not shocked----but very disappointed in the medical community. Here you have all these signs and symptoms of B12 deficiency---- and no one has formally or properly tested you-----unbelievable! This just goes to show how many people this is happening to.SallySally
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  • Dear Sally. I went straight to Borders Books yesterday after work and purchased your book. I am on chapter 3. Wow! My mom is suffering from dementia and her older sister has Alzheimer's. Her middle sister has iron deficiency anemia and has been diagnosed with a B12 deficiency. My sister has been suffering from fatigue and depression for years and now myself with the severe damage to my spinal cord and many other neurological symptoms. This incredible book has answered so many questions and is zooming in on something that for years was termed as "Bad Blood" throughout our family. Now, I finally have this tool...your book and some solid knowledge that perhaps is the key ingredient that has caused so much suffering within our family. My sister and I made an appointment for our mother and solid testing for B12 will be this first thing I demand from her doctor. I will take your book with me and push if I need to or take my mother somewhere else that has knowledge of B12 issues. So as I am reading and hopefully will finish by the end of this weekend, I am hoping to find a good doctor here in Michigan that has knowledge and knows how to handle testing and treatment? Any suggestions as to how I go about this search would be very helpful. I must admit that I am afraid I as well as my family will get misdiagnosed again. Sally..You and your husband are true angels. Thank you for pushing and not giving up.
    2B or Not 2B 8 Replies Flag this Response
  • I'm not Sally, but the short answer to your question is yes. I highly recommend a book on Celiac Disease by Dr. Peter Green. He explains how gluten affects the intestines in people with celiac. The consequence of the damage to the intestine is that there can be malabsorption of minerals and vitamins like B12. On the bright side, apparently, most celiacs who eliminate gluten heal their intestines and they eventually can absorb vitamins and minerals. There are a number of websites like celiac.com where you might be able to find useful information.I have read books on celiac disease--- but never came across the oligoclonal bands as false positives, which is extremely important to know--- for patients diagnosed with MS--- for they may have celiac disease. Yes, I know celiac disease causes B12 deficiency-- and we describe that well in our book. The problem is --- doctors who finally diagnose celiac disease-- often times tell patients that the intestinal mucosa will rejuvenate (which it will in time) BUT--- because of the numerous nutritional deficiencies (one of them being vitamin B12)--- this must be treated aggressively if the serum B12 is low or MMA high---- reason being--- is B12 deficiency causes nerve damage and demyelination---- which has to be taken seriously---- and treated. It makes NO sense to let the body start absorbing B12 from foods once the intestinal lining rejuvenates--- because #1 (how long will that take?--- several months----- and #2-- if the person has a documented deficiency--- the patient's B12 stores have to be replenished--- it would take years to build up --once the lining heals--- and one would never catch up to refill the body stores of B12 without intervention with shots and high-dose B12 lozenges. People who are treated this way are in poor health, take longer to recover, and are apt to suffer permanent neuro damage. One must treat the B12 deficiency--- along with letting the mucosa heal-- and strict adherence to a gluten-free diet. I had a case like this --42 year old male--- had to argue with his gastroenterologist regarding placing him on B12 shots--- it was one of the nurses aides husbands that I work with. After she read our book, she asked us to test him, "I know my husband has a B12 deficiency--- he has all the symptoms". We tested him--- and she was right! He had been seeing a gastroenterologist for years, numerous ER visits, and primary care doctor visits. His urinary methylmalonic acid was significantly elevated--- the cause of his B12 deficiency turned out to be celiac disease--- and they never checked this man for B12 deficiency--- even though he had numerous signs and symptoms of B12 deficiency (you see the B12 deficiency aided the doctor to explain the B12 deficiency)--- and then they told him--- Oh you will start absorbing B12 again, once you stay away from gluten. Not treating his existing documented B12 deficiency and numerous signs and symptoms (anemia, fatigue, weakness, dizziness, paresthesias, pallor, leg pains, depression) this is absurd. By giving him the B12 -- it corrected his deficiency and gave him a significant jumpstart back to health. My co-worker won the fight--- and the GI doctor gave in and started B12 injections.After his series of shots, ---he was a new man. (BTW-- he was on anti-depressants for years)----has been off them now for way over a year.Sally
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  • Sally,Thank you so much for your reply. I just wanted to add that Dr. Norman at Norman labs just called me with Bella's latest uMMA result taken on May 2. I am thrilled to report it is 1.6 well within normal range he said. Knowing that it is now 1.6 do you still feel I need to discuss with her doctors that she should be getting shots vs just being off the Prevacid and using Nascobal nasal spray twice a month? Bella just had a bad virus that caused her to have to be hospitalized for a day to be hydrated with an IV and she gets so extremely upset at just the mentioning of the doctors b/c she has been through so much in the past I hate the thought of doing shots now but I will do whatever I need to do to make sure she is taken care of properly. I know from past discussions with her doctors they feel like she does not need to have the shots so I know I will have to be really well prepared to argue otherwise. Since I just got the latest uMMa results I thought I 'd check in with you before I go forward. I am so deeply grateful for your book Could it be B12 and for your responses. You have truely helped me save my daughter!!! I know there are thousands of children on PPI drugs like Prevacid for acid reflux and I just pray that the pediatric GI community will start making sure that these chidren get B12 supplementation as long as they are on a PPI. I belong to a web community for parents with chidlren from GERD and have tried to spread the word but of course I think everyone is assuming my daughter is one of the rare side effects that most chidren wont experience but I think it is more common than not and unfortunately any problems that arise in children may be blamed on complications of reflux instead of the fact they may of been or are B12 deficient which is simple to treat if caught early. Thank you again, I will be anxious to hear you thoughts on Bella's latest uMMA of 1.6JenniferHi Jennifer,I guess the question is ---how are Bella's symptoms? Even though she looks good on paper--- we want to reverse any permanent neuropathy if possible.If her doctors completely refuse---she needs to get more intranasal B12 squirts---every other day x 5 times, then go to once a week. In-between the nasal-B12, I would give her a methyl-B12 lozenge 5,000mcg daily (they suck on it--- or she can chew it) they taste good in cherry or lemon flavor (so it won't be an issue for her to take).One other thing that needs to be checked on Bella is iron deficiency. Iron deficiency can give one cold hands and feet-- and they can feel numb. Not only does PPI's cause B12 deficiency--- but iron deficiency is common in children--- and PPI's stop the stomach's parietal cell--from secreting hydrochyloric acid (which is needed to help absorb B12 and iron). So--- they need to make sure that an co-existing iron deficiency is not also present. The blood tests are serum iron, TIBC, ferritin. (ferritin is important---it tells the body's stores of iron).I'm am very pleased that our book has helped Bella. Please, write a review on Amazon.com --it will help others realize what an important book this is. It really is a crime that doctor's are prescribing PPI's like candy and not remembering the physiology of what the parietal cell does-- and how easily one can become B12 deficient. Most of all they are not up to date of what B12 deficiency can do--- even in pediatrics. All women with post-partum depression and post-partum psychosis need B12 deficiency ruled out with B12 and MMA testing--but they never do.We just had a case in the ER where a 60 something year old male came in for depression and "hearing voices to kill his two grandchildren". Obviously, he was admitted to a psychiatric unit-- and thank goodness he came in for help. This man--- should be tested for B12 deficiency--- and was by my co-author --- and was grossly positive for B12 deficiency. Question: How often do you think psychiartic patients are tested for B12 deficiency? Seldom--- and rarely using MMA testing with the B12. If he was seen by any other ER doctor-- he would not have been tested (he was under numerous doctor's care for other ailments--including cardiac)--but no one ever tested him. He was deficient for years--but no one ever tested him.All psychiatric patients need B12 deficiency ruled out--- but they aren't.We need a B12 awareness campaign--like they have for other disorders.Sally
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  • Sally,I hope I am posting this right, i am having trouble with it, Please help me!!!I have had my CT Scans and MRIs of brain and spine and everything has come back normal. However, my blood showed that I had a very low B12 count, it was a 73, I also had low magnesium, which was low on a normal level. I have been having really bad 'headaches' if you want to call them as my main symptom, they are headaches, and also sometimes feel burning and tingling, I have almost little or no other tingling anywhere else. I have had anxiety and been feeling really sad lately. My MD told me i was depressed and gave me effexor, which i refused to take. I have read that B12 symptoms can cause depression. I do not feel depressed about life per se, just about my condition, my headaches are not as bad as they used to be, however, they used to be incredibly debilitating. I also have had trouble sleeping, chest pains, and abdominal pains (very slight). Also, lately my blood pressure has been really high, which has not usually been a problem for me. Everything was tested, my heart, blood, etc, and it was concluded nothing serious was wrong. I DO have acid reflux, but have only been on the meds this time for about 1 month, and 3 years ago for about 1 month (protonix). I have had B12 injections of 1000mcg each for a total of about 13 injections over the past 4 weeks. My headaches got worse and now are slightly better, but are not gone. Do you think the B12 is the cause? What else could it be? Any thoughts or advice would be greatly appreciated, as I have been battling this for over 5 months now. I have seen MD after MD and everyone thinks that I am crazy or depressed! PS-I have an appt. with a GI for an EGD on May 15th. Also, I bought your book and cant wait to read it (I also have an autistic brother). I cant wait to hear your suggestions. Thank you so much. Katie
    Katie0414 9 Replies Flag this Response
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