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How did you get help with Vitamin B12 Deficiency Recovery?
Bones, Joints & Muscles | Last Active: Jul 12 9:05am | Replies (14)Comment receiving replies
From my understanding, to accurately test for b12 serum you need to be off of b12 supplements and b vitamin drinks for at least 4 months (the average life of a red blood cell) . There are other tests to be ran too, but there is no gold standard test. Plus, there is research that the "normal" cut off of above 200 is too low, especially if neurological symptoms are present. Have you heard of the book Could It Be B12? I listened to it for free thru my local library and the free app Hoopla. You can also watch the free movie Sally Pacholok on YouTube. She also has a website. From my understanding, if you have neurological symptoms you need every other day b12 injections until symptoms improve. I am going thru similar issues of buzzing and tingling in my leg. I am also getting the run around in doctors. I have lots more to say on this. But I'll stop here while you have time to process and research what I've said. I've learned I have to advocate and fight for my life.
Replies to "From my understanding, to accurately test for b12 serum you need to be off of b12..."
Agreed! If you are diagnosed with or suspect you have a B12 Deficiency, the book "Could It Be B12" is a must read.
I developed the GI disease Microscopic Colitis in 2018 because of a parasite that I accidentally ingested during fresh water swims. Cured the parasitic infection but Colitis was the collateral damage. Fast forward about 4 years when I developed first peripheral neuropathy, followed by foot drop, electrical shocks that I call zingers, a catch in my voice, even mild cognitive decline.
My doctors weren't connecting the dots so I had my B12 tested by a vetted lab in San Diego. No B12 level could be read! I bailed on my conventional doctors for this and saw a "Functional Medicine Doctor". She completely agreed that the B12 levels and symptoms were related. Started injecting Cyanocobalamin once a week and have been doing so for the last 6 months.
Happy to report that all of the symptoms except peripheral neuropathy which is about 50% better have completely resolved! It has given me a new lease on life. Colitis is inflammation of the large intestine. This left me with a "malabsorption" problem for B12. It took a few years for my liver to use up the existing B12 but when that happened, the symptoms started to appear.
I now take weekly injections of B12 in the Hydroxocobalamin form (stays in body longer than Cyanocobalamin). I will need injections for life although we may be able to stretch out the intervals in time but not even going to consider that until at least the 1 year mark. It takes a LONG time to heal neurologically from B12 deficiency!
Questions, please ask. This is absolutely a hidden epidemic! Most convention western doctors know very little about this. How to diagnose, how to test (tricky) and how to treat! Please read this book. It could change your life. It sure changed mine!
Good luck to all of us!
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I've been on MONTHLY injections of B12 for the past 9 years, as per neurologist-consult at Columbia Presbyterian Medical Center (NYC). Was sent to three top neurologists, two at CPMC and the other at Mt. Sinai, when the neurologist here in Westchester was unable to figure out just why I was having all the signs of MS but nothing was "conclusive", nor was it Grave's disease, or Lupus, or any other disorder/disease....The B12 was ordered due to my optic nerve damage, multiple brain lesions, double vision, lack of balance, and a slew of other frightening things happening all at once and making life a living hell. I was told that with all the things going on with my CNS and my peripheral neuropathies, that the B12 shots would make sure that my system would be "better shielded" so I went for it, absolutely no hesitations. I have a standing appointment each month at my primary's office, and her nurse administers the shot.
Something I learned: I have fibromyalgia but my thighs are so much less sensitive than my arms and definitely don't even think of injecting my hypersensitive gluteal muscles. It's in my chart that the B12 is destined for the thighs (on the outer sides), alternate each month, and I found that it's best to STAND for the shot. Relaxing the leg/thigh aids in having a nearly painless injection. The nurse (and substitutes) say they have learned something from me!
I take Centrum Silver for women, and that has B vitamins also, as well as within foods. My blood readings are always within the normal range.
I continue having PN issues, the lesions ceased spreading for nearly eight years but last one indicated minor spread (the other neurologist-consult at CPMC had put in an order for YEARLY brain MRIs, to track the lesions and the signs of transient ischemic attacks). STILL no reason discovered as to the why of my brain demyelination, etc. I believe it's due to hyperlipidemia, which is familial (I traced it back several generations, back to early 20th century via Ancestry and other records). Will be discussing with my new cardiologist at January follow-up visit. One thing for sure, life has been anything but uneventful...And am in the process of finding a neurologist who has experience with the issues that my body persists on presenting. There are several in NYC, Yale in CT, and even Boston...but the distance from where we live is just way too taxing on me. Searching here in Westchester.🤞