Vitamin B12 deficiency is commonly misdiagnosed.

[Sally Pacholok, R.N., BSN]

You have to insist on a MMA and homocysteine test. Find out what your serum B12 level was. Doctors mistakenly state that your B12 is "normal" if it falls within the labs accepted range. But, many patients who fall under 400pg/ml have found to be deficient by ordering the MMA and Hcy test. Your symptoms absolutely sound like B12 deficiency, but you also could have some other neurologic disorder (like MS)--- but don't forget MS and B12 deficiency have similar signs and symptoms and are both demyelinating diseases. Doctors also mistakenly believe that a patient has to be anemic (low hemoglobin/hematocrit) and/or macrocytic to suspect B12 deficiency---- this is untrue. If you have had any B12 pills high dose (or injections) or sometimes even injections of steroids can screw up the lab tests. Before you start taking high dose B12 on your own--- you must get the tests to see if you really have it--- because if you do---- then you have a diagnosis and they aren't going to be guessing and putting you through other tests. It also will dictate how you are treated (series of injections--- etc.) and that this is life-long. Also, if you are found to be truly B12 deficient, then your doctor has to find out why--- autoimmune disease (pernicious anemia), malabsorption problem (ie celiac disease) etc.
BTW: Lhermitte's sign is also a sign of B12 deficiency.
Your doctor must properly rule out B12 deficiency--- because B12 deficiency has a treatment--- and neurologic injury can result--- I'm sure your doctor doesn't want to injure you or have a malpractice case against him/her if you prove to have a B12 deficiency. All it is --- is simple screening/testing, just like they screen for thyroid disorders or diabetes, you need to be screened for B12 deficiency with more sensitive tests. Time is ticking. Many patients that have contacted me regarding their diagnosis and misdiagnosis --- have used our book as leverage--- to get their doctors to test them--- kind of sad, but whatever you got to do. An excellent journal article to refer your doctor to is from Post-Graduate Medicine ---July 2001 (2001;110(1);99-105. Titled: Approaches to vitamin B12 deficiency: Early treatment may prevent devastating complications. By: Dr. T.S. Dharmarajan. They can download it for free--- you can too. Discusses MMA and homocysteine. You being only 28 years old--- probably makes them not think vitmain B12 deficiency, but many young adults have B12 deficiency for a variety of reasons--- but I am proud that they at least did a serum B12 ---- but it is not good enough.
You can contact me via my publisher if you need help: (800) 497-4909

[Sally Pacholok, R.N., BSN]

Skeeter,

I will check out the Pernicious Anemia Society---- thanks!

Sally

[Unregistered]

Hi Snoopy24,

Like you, early on I had stomach problems with acid reflux. At first, I used antacids then Tagamet (cimetidine) for about 6 months and finally my stomach was somewhat better for about a year. Then my other problems started....being tired all the time...sleeping 14 to 18 hours a day, having headaches that got to the point of being there 24/7, numbness and tingling in arms and legs. Your symptoms of sore mouth and tongue are very much symptoms of pernicious anemia (PA).

You said that you had an MRI...What part of the body did you have it? Sally is right..in that the symptoms of B-12 deficiency can be the same for MS. Usually doctors do MRI's of the brain and spinal cord to check for MS.

Keep pushing your doctor for answers. In the link below, is alot of helpful info. Print yourself a copy of it and take it with you the next time you go to the doctor.

http://www.pernicious-anaemia-societ...pa-article.pdf

It will tell you: What pernicious anaemia is...it will tell you what the symptoms are...what tests are done to determine if you have it...what the treatments are. If you have pernicious anaemia...what other tests you should have done.

If, after reading this info...and you still would like more info...check out the website I have posted in my previous posting. It is a very good website...with alot of people there (me to) that can help with answers and links to answers.

TAKE CARE...SKEETER.

[snoopy24]

Sally, Skeeter, thanks so much for replying. I'll check out the links and articles mentioned.

I meant to specify I had an MRI of the brain - so that ruled out MS and other major neurological diseases already. There was nothing suspicious at all on the images. And the two nerve conduction tests also did not identify anything out of the ordinary. Basically, both the neuro and my PCP have thrown up their hands and said that the tests say my body is normal and healthy.

I have an appointment with my PCP in a couple weeks, I'm hoping to be armed with some information by then to get him to investigate further. He's a very nice doctor but very old-school, so I don't know how willing he will be to listen to me. I plan on taking a list and timeline of all my symptoms including the ones I didn't mention previously. I'm sure he's going to say, "but your blood count and B12 level were normal...."

[Unregistered]

Hi,
My wife has just been diagnosed with low B 12. The doctor says the lowest level they record is 180 and she is 186.

She has serious problems with migraines, fibromyalgia, arthritis, muscle weakness and even infertility.

Based on what I am reading in this forum, I see this can be caused by the B 12 deficiency.

Her doctor wants her to take one shot per month until he tests again in a few months. Based on what I am reading, will this help at all?

It seems like this needs to be more vigorous.

Thanks for your help.

[erni119]

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.

[Eatafruit78]

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/

[acuann]

Eatafruit78,
Thanks for writing on this post as I was going to also suggest NAET. I cannot believe how much better I feel after this treatment! IT is just simply fantastic! I am glad you have also had such good results with this

It really addresses the WHY of B12 deficiency. Often it is due to malabsorption problems and allergies. allergies are a major cause of chronic disease, and NAET is the only treatment available that really eliminates the allergy. I can't recommend this highly enough.

Best wishes
DOM

[Eatafruit78]

Eatafruit78,
Thanks for writing on this post as I was going to also suggest NAET. I cannot believe how much better I feel after this treatment! IT is just simply fantastic! I am glad you have also had such good results with this

It really addresses the WHY of B12 deficiency. Often it is due to malabsorption problems and allergies. allergies are a major cause of chronic disease, and NAET is the only treatment available that really eliminates the allergy. I can't recommend this highly enough.

Best wishes
DOM

My pleasure. We are on the same page. People often think that allergies are like red rash or hives only. In the broader sense, allergies are produced by anything that does not "flow" with our body's energy. Even not been able to use nutrients can be considered an allergy.
Nambudripad is ahead of her time- but she figured out how to climb the hierarchy of the body and go up to the Nervous System- which really is controlling the Immune System.
If anyone thinks that the Immune System can become a ****** off warrior, wait till you experience what a ****** off Nervous System can do.
We need to reason with it, not ask him to shut up.

Peace, Love and Light to Everyone.
Warm Regards
Eatafruit78. (Make sure you eat-a-fruit w/o pesticide).

[Sally Pacholok, R.N., BSN]

To the man writing regarding his wife's serum B12 was in the 180's--- you are correct---getting one shot per month is not enough. She needs to get a series of shots to replace her body's stores (which is a 1mg or 1,000mcg shot every day or every other day x 5 to 7 injections, then once a week (x 4 weeks), then once a month for life. Some people need a shot every 3 weeks. Yes, she needs to get the shots and should! She also can take methylcobalamin 5mg daily inbetween shots. Her doctor can teach her or you how to give an injection (which is very easy)--- prescribe you a vial of B12--- and that way you do not have to go to the office every day etc. If she went undetected for B12 deficiency for a long period and has damage---- some people will improve--- others will not--- but you must remember--- a person with a B12 deficiency has to be treated--- because they will slowly progressively worsen. Your wife may have other health problems going on at the same time---- but she must be treated. Again, I am shocked that doctors are not ordering the methylmalonic acid test to aid in diagnosis. Her doctor is under treating her which is substandard or poor practice. Check out the article I talked about in a previous thread, also our book, and even www.b12.com
In the January issue of Nursing 2007 I wrote an article regarding frequent misdiagnosis in the elderly (not that you have to be a senior to get B12 deficiency) but they really get misdiagnosed because of preexisting diseases, co-morbid conditions, and age discrimination. Demand your wife get treated properly.