Damage from pernicious anemia

[Book12]

Does anyone with pernicious anemia feel a buzzing or vibration inside your body? I look down I feel it I raise my arms and I feel it.

[BethCam]

I had something similar for a few months after beginning injections. It only happened when I looked down while my heart rate was up walking. People said it was a coincidence that it was happening at the same time, and the doctor seemed unconcerned. I haven’t felt it now in a long time.

[AlaskaRuth]

I get it off and on, pretty frequently. And actual zaps that are painful and make me jump. It moves around -my foot, my leg, my arm, my thigh. I’ve self injected for many years, 1xweek. It’s a weird buzzing feeling.

[pitney]

I get a sensation that feels like I have swallowed my electric toothbrush

[Sleepybunny]

Hi,

I used to feel my whole body was vibrating before I started B12 treatment but these days I only rarely feel it .

Are you getting enough B12?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Overseas members can use online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

I'm not medically trained.

[genesurf]

Yes! I used to feel buzzing, vibrations, zips, zaps, and tingles.

If you feel electrical sensations when you look down, it might be L'hermitte's sign. verywellhealth.com/what-is-.... I used to have that, and Tinel's sign at wrists and ankles. healthline.com/health/tinel.... Irritated nerves.

All these weird sensations have mostly faded away over the past two years since I've taken B12 injections. Still have a teeny bit of tingling and some Tinel's sign left.

[jimmel196 in reply to genesurf]

When you look down or tilt your head down? I used to feel the electric sensation s when i would tilt my head down. Oh my gosh, I had no idea anyone else had the same thing.

[jimmel196]

I have buzzing and vibrating in my arms and legs frequently. I also have electric surges in my hands and down my legs and into my feet. I have the misfortune of having peripheral neuropathy in my hands and arms, up to my elbows and in my feet, legs, hips, and up to my umbilical area. Thankfully, my neuropathy only produced pain in my hands and burning in my feet and a numbness/tingling.