Avatar universal

B12 deficiency + neurological problems


For nearly twenty years, I've had progressive neurological and neuromuscular issues with fasciculation, tremor, and myoclonus plus horrible burning pain in my legs and numbness in my arms that wouldn't go away, plus numbness and clumsiness. It would take a long time to explain what the pain felt like. I've had MRI, MRA, EMG, EEG, EKG, and more blood tests than I can count, and I'd seen seven neurologists in total and have been placed on about two dozen medications and was told it was psychosomatic at times and personally gave up figuring anything out. Then it took a turn for the worse, so underwent many more tests at the hospital here because I was really sick with new symptoms.  

It turns out that I had a severely low B12 deficiency that was unnoticed because I wasn't tested for it. I'm not vegan and don't have any stomach problems, and I'm not elderly. So I'm waiting to find out if it's pernicious anemia or some other cause since it's not 100% clear if I have anemia? I have been ordered B12 injections daily for a week and then once a week for a month and possibly longer.

My recent symptoms were intense shortness of breath and shakiness/tremor along with fatigue, tachycardia, and headache plus seeing stars from literally any exertion. Also, I fainted. These are anemia symptoms. These are what finally brought me to the doctor again. These symptoms were brand new and just started a few weeks ago.

My blood labs do not make full sense to me, and my doctor didn't explain them clearly. Can you help me understand if this is, or is not, anemia too (the B12 deficiency is obvious)?

B12 = 152 (range 200 and above)
Rdw, Rdc = 11.8 (range 12-16)

I cannot find much information about the above test except that it means all of my blood cells may be large or else small.

All of the other blood looks normal? This is where I am confused because if the rbc is low, that's anemia, isn't it?


red blood cells count -- 4.33 (range 3.60-5.70 K/uL)
hgb -- 13 (range 11.5-15.0 M/uL)
hematocrit -- 38.2 (range 34-46 g/dl)
mcv = 88 (range 80-100 fl)
platelets count = 202 (140-400 K/ul)
WBC Count = 7.4 (3.5-12.5 K/uL)

Thanks if you know why the rdw, rdc would be low with low B12 and normal other red blood cell stuff plus definite anemia symptoms. Also, are there other tests that they ought to be ordering? The doctors have been wonderfully helpful but admittedly confused throughout. These are just a few of the labs. They ordered about thirty others, and I have most of them and am still waiting for a few. I think they are testing my intrinsic factor.

The doctor did say all of my symptoms were caused by the deficiency, but was a bit vague on the B12 vs. anemia part. Thus my question and posting of blood labs. Also, if it's not pernicious anemia, I'm at a loss for why I would have B12 deficiency when I have a good diet and no known stomach issues. Any ideas about the labs?
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Avatar universal
Here is the answer to your original question... Do you have anemia? I cannot say for certain, but based on your numbers I would say no, not in the traditional sense (typically, I would need to see repeated RDW/RDC test results at 11.0 or lower followed by a few other markers).  Your numbers point back to a methylation issue as the driver for low B12 and RDW/RDC numbers.  Here is a breakdown of the of the process...First and foremost, levels of vitamin B12 and folate (B9) in their methylated state, are necessary for red blood cell production and balance. Once they are in the the methylated state, the body pushes them through the folate cycle then the methioinine cycle to drive proper RBC numbers(as well as numerous other functions) . IF you have any of the MTHFR mutations, your ability to convert Vitamin B9 (and secondarily B12) to their methylated state is reduced. This will leave you with low B12 and abnormally low blood count numbers in one or all of the parameters. You may also lack sufficient intrinsic factor for B vitamin uptake in the gut. Having intrinsic factor is not an either/or issue but a sliding scale.  In other words, you may have some but not enough to uptake sufficient amounts. Both of these issues are fixable(if indeed this is an issue for you).  I totally agree with the previous poster that you must be very careful with the supplement products sold on-line and at stores, most of it is garbage.  There are a few high quality products out there and some that will require a prescription.  
I am not sure if this answers your question or not, so let me know if you still have questions.        
Helpful - 1
9197017 tn?1429016816
Also, when you begin supplementation, start at a low dose, and very gradually increase to the target dose.

If your Dr. recommends IV treatment, be sure to make sure dr is using an active form of B12. Whether or not you have an issue with MTHFR, active forms are easier for our bodies to synthesize.
Helpful - 0
9197017 tn?1429016816
I've looked into B vitamin deficiencies for myself. The supplements that have worked for me are the ACTIVE forms, not the synthetic forms.

Look for products with "methyl" in the name.
There's a lot more involved in selecting the appropriate supplement...choose your online research sources carefully.

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Avatar universal
My doctor has not been clear if I am anemic because the blood labs are "weird."

Do you, or anyone else, know if these labs show anemia?

I have been having literally textbook symptoms of it, but my hemoglobin and red blood cell count is normal. What is not normal is the "rdw, rbc" level, which is a little low. ***I cannot find much information online about this being low with all of the rest being normal.*** Is that anemia of some kind?
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Avatar universal
Sorry, for the errors further into my previous post. This is a  prime example of why you should not take your sleep aid medication until after you get off the computer (I of all people know better!). Anyway, there should be a number of medical providers within the bay area that are well versed in reading and interpreting the MTHFR/Methylation results.  If you have any issues with this let me know and I will get a list of them for you. Lastly, I was trying to say that a chemist I work with, excels at developing non-prescription treatments. He has developed one specifically for MTHFR mutations that would likely address your needs should you test positive for any of the mutation sites.  There are a number of supplements available, yet each one lacks one or more properties to make it easy for the body to properly absorb and/or only addresses one part of the "fix". It should be available in a few weeks, and I will post the name of it here when it is ready should you be interested.
  Bottom line, based on your blood result concerns (low count, anemia, etc.) and pain based symptoms, having your MTHFR tested would be the next logical step to take.
I hope this helps you in your search fo
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Avatar universal

   Your symptomatology is very similar to a number of patients that I have been called in to consult with (I am a pharmacologist specialized in drug treatment synergies, not an MD).  My first question in your case is to ask if you have ever been tested for MTHFR mutations (methylenetetrahydrofolate reductase (NAD(P)H). You can have the two primary sites tested (677&1298) or a complete methylation panel.  This can been done by a simple mouth swab for DNA or a blood draw.  I noticed your location (I am in the same state) and can recommend a testing entity in your area if you would like, just send me a note using the MedHelp option so that no personal info is posted on site.  A simple Google search using the term "MTHFR and Anemia", or "MTHFR and "X" (x=some of your other issues) will return pages of results showing the correlation. This is a field that has really taken off over the last few years, and many doctors have not been brought up to speed with the new data. In a nutshell B9 and B12 work hand in hand, and when the mutation block the bodies ability to convert both of the vitamins to their active methyl form a cascade of negative effects will run ramped and you system will become toxic in different respects. the mutation is easily treated based on the the results once destined and even more important finding a person who read, understand, and knows what is to be done.  The test result would also be almost free to do.  I spoke with a natural chemist that stated that their was be a non prescription product available in a week or two which did the best in head to head testing  against other testing.  Just let kn ow if you would like me to help with you process.  
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