How did you get help with Vitamin B12 Deficiency Recovery?

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. Additionally the basic b12 serum test doesn't really tell what's actually getting to your body at a cellular level. 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.

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.🤞

I had an elective cholecystectomy (gall bladder removal) in February 2022 at 49yo. I was in great health beforehand and was very physically active. After about a month, I had a PET scan and a head contrast MRI one week apart. In the days after the MRI, I had significant brain fog and then the onset of cognitive symptoms that made it impossible to do my work or even something as trivial as following a story in a TV show. I had no motivation to get up and do anything. My memory was shut. I started having hand tremors, muscle weakness, and rapid muscle loss, especially in my thighs. I also noticed that my skin was suddenly rubbery, thinned, and creepy at folds like the elbow pit, as well as wrinkling fingertips . I contacted my surgeon and my gastro at Cleveland Clinic to see if this could have been surgery related. They directed me to primary. I didn't have a primary at the time, so I went to see a CC neurologist. When I finally got to see one, I also had terrible insomnia, and feeling of anxiety in my body without anxious thoughts, and muscle twitching all over my body. She ordered blood tests and while B12 and B1 were on the lower end of the normal range, D was very low, MMA normal, and folate high. The neurologist didn't offer any further assistance and said that my issues might be psychiatric (what?). I went to see another neuro who ordered homocysteine and ferritin. Homocysteine was high and ferritin was very low. As I started to supplement, some of my symptoms have improved, especially cognitive issues, anxiety that would come out of nowhere, muscle strength, and twitching, but I'm still struggling with trembling hands and skin that hasn't improved much if at all. A brain MRI (without contrast) was normal. Although I asked for MRI of cervical spine, the neurologist didn't think it was needed.
I haven't gotten a definite diagnosis. My hypothesis is that the surgery and the procedures that followed induced a lot of stress on my body that depleted the essential vitamins. The digestive distress as a result of the cholecystectomy affected the nutrient absorption, and my body was struggling to maintain itself.
I'm continuing with supplements, and my levels are in the high normal range. It's been about 10 months, and I'm not sure if I will ever be back to the way I was just 18 months ago.