Vitamin B12 deficiency is commonly misdiagnosed.

[Unregistered]

I am looking for any advice or people with similar symptoms. I am 32 years old. I began taking prenatal vitamins about 3 years ago as I was planning to get pregnant. I got pregnant very easily, miscarried, then got pregnant immediately again. At about 20 weeks into my pregnancy, I began to experience L'Hermitte's sign. I didn't know what it was, I just thought it was some pregnancy weirdness. I also began to have severe anxiety and nocturnal panic attacks. I gave birth 5 weeks premature, not sure why. I am still nursing, my daughter is now 20 months old. I still take my prenatal vitamins. When my daughter was one year old, I began to have the L'hermitte's sign again and I had numbness and weakness that travelled all over my body. I had no pain. I also had a tight band sensation around my bra-line. These symptoms lasted a few weeks, then all disappeared except a funny glove like sensation in my hands. I had an MRI, there was a lesion in the C4 area, no brain lesions. The neurologist said I have a 20% likelihood of an MS diagnosis. She wasn't worried about my B12 because it was in the 400's. I am wondering if the high amounts of folic acid in my prenatal vitamins could be masking a b12 deficiency. I also have a history of floating stools and bloating/gassy stomach. My mother and grandmother have thyroid disease and my grandfather just died from pancreatic cancer. The neurologist wants me to get another MRI in a few months to check on the possibility of MS. I don't want to waste my money on the MRI, I would rather explore other causes. But, I don't know if I should get a second opinion or just go with the doctor who isn't worried about B12. Some days the sensations in my hands are worse than others. Some days my face will feel tingly and my tongue will feel tingly, but not always. I never really had any fatigue or pain. Any suggestions will be greatly appreciated.

[Unregistered]

I am in my thirties and recently diagnosed with B12 deficiency (180 on the B12 blood test). I am self injecting (by prescription) .1ml (100mcg) of Cyanocobalamin daily for the first five days, then once per month. My first question is that starting after the first injection (I've had 3 injections so far), I have been getting shooting pain from the top of my neck up the back of my head (a cramping sensation--bad headache.) This is happening several times per day, along with new leg cramps). Is this a common side effect of the injections, and if so, how long will it last? (I have an appointment with a general practitioner in a few weeks time--soonest they could see me; it was my neurologist who discovered the B12 deficiency and prescribed the injections.) My second question is if it is common for voids in the frontal white matter to show up on an MRI of the brain, in association with the B12 deficiency. (I was being tested for MS: problems with concentration/memory, loss of balance, pain & numbness w/ "pins& needles" in limbs, loss of feeling in tips of toes and fingers, etc.) My third quetion is how common is B12 deficiency in the late 30's age bracket? From what I have read, B12 deficiency is fairly common in people over 75 years of age, but I haven't read much about middle aged adults with B12 deficiency, and what might be the cause. As far as I know, I am not anemic and do not have any symptoms of tape worm.

[best friend]

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!

[Sally Pacholok, R.N., BSN]

A serum B12 of 217 is low. Your doctor should have done a methylmalonic acid (MMA) test and a homocystiene (when he/she found a low serum B12) to prove there was a B12 deficiency. If he/she injected you with B12 before doing the two above tests---- they will have screwed up the results. Regardless a serum B12 of 217 with your symptoms needs to be treated. Hydroxocobalamin 100mcg is far too low of a dose--- it may change the hematologic picture, but may not improve the neurologic picture. If a person is having neurologic symptoms they should use the 1,000mcg dose like they use with cyanocobalamin. Hydroxocobalamin comes in a 30ml vial and 1,000mcg per 1 ml, so 1 ml is injected. I personally take hydroxocobalamin 1,000 mcg every 3 weeks IM. When one is newly diagnosed, or trying to reverse neuro signs and symptoms, a typical protocol is 1,000 mcg IM every day or every other day x 7, then once a week x 4 weeks, then once every 4 weeks for life. Some people feel they need it more an get an injection every 2-3 weeks.
If your doctor refuses to give you more---- you should take sublingual or B12 lozenges but in the methylcobalamin form 5,000 mcg daily. Again the 100mcg is much too low. I strongly suggest you read the book I wrote,
"Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, 2005, 13 reviews on Amazon.com. (just got a new review from a woman titled, "This book saved my son." Or even check it out of a library (or ask your local library to get it ---- and get educated. This is your life. You do not want to have permanent neurologic injury due to your doctor's knowledge deficit. Suggest he or she read it also. I have been studying vitamin B12 deficiency and autoimmune pernicious anemia for 20 years, I have read, studied and reviewed hundreds of medical journal articles ---- and numerous hematology, neurology, internal medicine, pediatric, genetic medical texts regarding this.

[Sally Pacholok, R.N., BSN]

Responding to the woman in her 30's:

1. Yes B12 deficiency can affect any age--- typically people young in there 20's, 30's have autoimmune pernicious anemia (PA). The reason so many people get misdiagnosed--- and their doctor assumes they have MS verses B12 def. or PA is because they too think it is an old person's disease. Elderly people get is because of a normal process in aging where they lose their stomach acidity--- and have atrophic gastritis--- so they malabsorb vitamin B12--- it is not caused by an autoimmune disease.
I had autoimmune pernicious anemia at the age of 21--- but had it when I was about 19. I have read numerous other cases of young adults and even children. Yes, it is not as common as adults---- but any person regardless of age who has signs or symptoms of B12 deficiency ( which by the way are identical to multiple sclerosis) should always be tested with serum B12, MMA, and Hcy. I am proud your neurologist diagnosed you.

2. Cyanocobalamin 100mcg is much too low of a dose. 1,000 mcg should be injected and hydroxocobalamin form would be preferred.
Some people who have neurologic injury from delayed diagnosis---- sometimes get increased pains when starting therapy. However, you may have another condition going on with this--- and your doctor should see you sooner. Some people are sensitive to the preservatives mixed in with the cyanocobalamin.
Your doctor should have ordered a methylmalonic acid (MMA), homocysteine, parietal cell antibody, gastrin, intrinsic factor antibody--- to see if you have autoimmune pernicious anemia. There are a variety of reasons you could be B12 deficient (vegan, malabsorption problem (Crohn's, celiac), specific drugs (PPI's, nitrous oxide), etc.

Read the above reply to how a series of B12 injections are needed to replace body stores. Again, 100mcg is an underdose.

The book I wrote---- is 220 pages (easy to read for lay people) and explains everything regarding B12 deficiency, dosage, different forms of B12, signs, symptoms, misdiagnosis, elderly, children, dementia, frequent falling, injury/disability, malpractice cases, neurolgoic disorders, vascular disease (MI, CVA, DVT, PE), mental illness, nitrous oxide, overview, infertility, a chapter for physicians and health care professionals--- which lay people should read too (still easy to understand).
There are 13 reviews on Amazon.com--- one new one written by a mother of a 10 month old baby, titled "This book saved by son." Even infants can get vitamin B12 deficiency. What we are trying to promote is educating the public, physicians, and other health care professionals to test symptomatic and at risk patients. A standard of care change is deperately needed to prevent injury, disability, from late diagnosis or chronic misdiagnosis. It is absurd for doctors not be testing their patients and for patients to have neurologic injury. I hope your case was diagnosed early---- but 100mcg is underdosed. You also can try the 5,000mcg of SL methyl-B12 daily along with your injections that are spaced out.

[Sally Pacholok, R.N., BSN]

To the reply in Lombard, Illinois:

If your friend truly has a vitamin B12 deficiency that was diagnosed by her doctors--- she needs to be treated. One or 2 injections or underdosing is not going to magically make her better. Sometimes people are treated late and some signs and symptoms persist, but she needs a series of injections to replace body stores of B12 throughout the body.
(injections should always be 1,000 mcg not 100mcg). And again, as I have stated before--- methylcobalmain 5,000 mcg lozenges or SL may assist.

Mental symptoms are common in vitamin B12 deficiency. Just so you friend knows, there was a major malpractice case in 1996 of a 45 year old woman who was chronically misdiagnosed. She was a nurse, and 10 doctors failed to diagnose her and 2 medical institutions. In 2001 she won a 3.1 million dollar malpractice suit---- but she is left permanently disabled. She was in a wheelchair for a long time, but has progressed to using lobster crutches to walk. She has urinary incontinence issues (caused by nerve damage) suffers chronic painful neuropathy, and has some permanent cognitive problems, along with other B12 related injury. No money in the world is worth trading in--- for your health or life. Her life, her husbands, and children's have changed for ever. 3.1 million was hardly enough---(I'm sure her attorney's got some of this). In addition, she cannot work, physically or mentally hold a job. She is now 56---- all of this could have been prevented----- and B12 is treatable. Numerous doctors misdiagnosed her--- she ended up suing the people (doctors and hospitals she worked for who were her colleagues). If your doctor is not taking you serious or your friend serious have them call Clifford Law Firm in Chicago, Illinois (they are the firm that won this woman's settlement).

Also, someone asked about problems with the frontal lobe. Yes, this is common. MRI's of people with severe B12 deficiency show demyelination of the central nervous system (which includes the brain).

[KnowSUMthings]

When I contacted my doctor about the constant lump in throat and ocassional fatigue, she sent me to URL and when nothing was found, she just told me I should be taking vitamin B supplements for a few months. And I did....I thought it gave me more strengthent as I didn't need any naps in the after noon like I did before.

I am on a diet now, getting around 1500 calories a day and I stopped taking vitamin B (i forget) although the diet says I should be taking it.

Should I put my mind to regular vitamin B supplement intake since I am not getting any from my diet????

[Sally Pacholok, R.N., BSN]

Your doctor needs to test you to see if you have vitamin B12 deficiency by doing the following 3 tests: methylmalonic acid (MMA), serum B12, homocysteine. Sometimes oral supplements are not enough---- to see if you need more or the oral B12 is not enough, the MMA test should be done. MMA test is specific for vitamin B12 deficiency. When it is elevated this means a deficiency is present. see www.B12tester.com for more information on MMA testing and signs and symptoms of B12 deficiency. Your doctor can test you at a variety of labs, but this site is very informative and Dr. Eric Norman developed the urinary MMA test over 20 years ago.
If you have severe kidney disease (renal failure) or are severely dehydrated the urinary MMA is more sensitive for it adjusts to your creatinine clearance --- so you do not get a false positive.

[skeeter]

Hi Sally,

Also, Hi to all that have pernicious anemia. I have had pernicious anemia (PA) since Feb. 2001.

I joined an international forum that deals with just that.

I invite you to take a look...check out: "MY STORY" and "GENERAL DISCUSSION" and read members stories and the different topics related to pernicious anemia.

Hopefully you will like what you see and become a member...and join in the discussions.

The website is:www.pernicious-anaemia-society.org/forum

** PLEASE NOTE:

When you get to the home page....click onto "Forum"....when the next page comes on screen...click onto: "MY STORY" or "GENERAL DISCUSSION"...then click onto what ever topic you are interested in.

TAKE CARE...SKEETER.

[snoopy24]

Bear with me, this is going to be a book!

I’ve been on a wild medical ride over the last 4 months, have lots of bills now and still no answers.

One day I started feeling this awful pain and pressure sensation in my upper abdomen, under my ribs, like someone had punched me in the stomach. For several days, I had no appetite. I finally broke down and went to the doctor. He ordered an upper GI x-ray and a gallbladder ultrasound. My gallbladder was normal, but my upper GI showed that I had acid reflux disease (not a surprise to me since I’d been nursing it with over the counter medications for years.) The doctor started me on prescription medicine to treat the reflux and I hoped the pain would go away. It hasn’t yet after 4 months.

In the meantime (within a week of my stomach problems starting) I started having numbness and tingling in my arms and legs, especially on my left side. Even my face would feel numb sometimes. I tried explaining this to the doctor. He diagnosed me with sciatica, which I did have (also was nursing that along with OTC meds), which resolved after a course of anti-inflammatory meds. But all that while, the numbness didn’t go away. And I kept feeling tired all the time.

Finally last month, I made another appointment and tried to get across my point to the doc – hey, these things all started at the same time, isn’t there a good possibility they’re related? He sent me for an abdominal and pelvic CT and a bunch of labwork, including a CBC, metabolic panel, liver panel, cholesterol test, thyroid tests, the works. Everything came back normal. He referred me to a neurologist.

The neurologist went through the usual neuro exam. Sent me for an MRI and somatosensory evoked potential test, then a nerve conduction study. The MRI was normal, and nerve tests were normal. He even ran a B12 level, which he told me came back normal. He said my problems are probably just nerve inflammation and it may just take time for it to resolve on its own – call him in 3 months if it’s not better.

So here I am, now stuck trying to figure things out on my own because I KNOW my body is not right, I just can’t get any medical tests to prove it. I’m only 28 and feel like my body is falling apart.

In addition to the above, I’ve had other symptoms less frequently that I didn’t bother to mention to the doctors because they just didn’t seem important at the time. I’ve been having occasional muscle twitches – tiny little flutters kind of like an eye twitch – anywhere in my body, but mostly in the legs. Also, back when I first started feeling sick in November 2006, I think I experienced Lhermitte’s sign several times – a shock-like sensation when I would tip my head a certain way. At the time I just figured I had a pinched nerve or something, and after a week or so it didn’t bother me again so I didn’t think of it. Another thing that’s bothered me on and off for about 9 months is sore mouth and tongue – it just feels raw and sore, especially around the tip of my tongue and underneath my tongue. At an urgent care visit early last fall, a doctor wrote that off as dry mouth due to a sinus infection.

Lately I’ve noticed occasional tightness in my chest and a tendency for my heart to be sort of “thudding” in my chest – even though my BP and heart rate are usually normal when I see the doc. I get winded just climbing up 5 or 6 stairs. While I am overweight, I was in pretty good shape up until all this started. I also get aching in my arms and legs – just a deep dull ache – reminds me of having growing pains as a kid.

So my actual questions:

Does all of that sound like B12 deficiency?

Are symptoms of B12 deficiency constant, or do they come and go? For example, I’ve had sore tongue/mouth off and on over the last 9 months – but I don’t notice it every single day.

HOW do you get a doctor to take you seriously when they’ve done the “standard” tests and tell you that you’re fine? For example, I’ve had a normal CBC and B12 level. (I know I did not have an MMA or homocysteine level done though). How do I convince my doctor that is not enough to prove I’m not deficient?