I’ve been receiving treatment for over three years now and had lots of symptoms some quite rare (I haven’t read of anyone else having them!) but over the last few months I’ve developed a new symptom. All over my face and body I get pins and needles - delicate little pricks all over my face, down my neck, across my head in my arms and hands and down my legs - not painful but really quite disconcerting.
I had my latest injection March 15th and usually I don’t get any symptoms returning for 6/7 weeks so this is new to me.
Any views as to what is happening will help.
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Alfabeta
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I have had similar symptoms! Mostly pins and needles all over my body. Hen I had my last injection the pins and needles intensified for approx 1 week then went away.
Could this be the nerves coming back to life, Alfabeta ? It is difficult to tell at the time.
I used to have a tingly weird feeling just under skin going down legs and arms to toes and fingertips, like minute iron filings flipping over and over, (like the magnet experiments in school ?)- which left me immediately exhausted, drained and nap-ready. Gone after 3 or 4 hours sleep. Naturally I did not think of this as a good sign at the time.
Don't get it now at all, but it has taken 1 1/2 yrs of self-injection every other day to make it go away completely. Still get symptoms, not as bad, and not all of them remain, but not yet had a totally symptom-free day, so still trying. I don't think this is particularly usual though.
Also quite interested in the symptoms that you are experiencing that you think may be rare - if you want to share, that is.
Thank you for sharing Cheryl. You described the feeling perfectly! I had many symptoms to start with but since my injections started over three years ago most went or faded away fairly quickly but I was left with a recurring symptom.
1. I would become semi conscious, I was still aware of everything but it dropped in sound - I could walk etc.
2 very loud tinnitus would occur like static interference
3 then I would drift into a euphoric state and hear a range of garbled voices which seemed to make sense like in a dream but made no sense afterwards.
The episodes lasted no more than 7/10 seconds and afterwards I was confused for about a minute - I could read words or hear conversation but make no sense of either. Then my body would feel a sense of shock for about 5 minutes or so then back to normal.
These occurrences used to occur in weeks 6/7 after my injection and last for around 5/6 days with 5/7 episodes on the first day than decline and cease. Sometimes I got one or two repeats either side of my injection.
The tinnitus stopped after about a year and the auditory hallucinations after about 2 years and have only recurred a few times. Now, I simply become semi conscious lasting about 5 seconds, then recover. However the sequences are still occurring- 6/7 weeks after the injection then lasting for about 7 days with the same frequency.
You described exactly what I experienced a few months ago. I’ve been getting b12 injections every 2 weeks (self injections) for about 7 years (PA) diagnosis. Went to doc and she didn’t know. My b12 was 450 at the time as doc did blood test. My level never goes above that. Started at 157 level. I though maybe got ahold of bad b12. But symptoms went away. I still suffer from tiredness, anxiety at times and worst is the brain fog ( feel like getting Alzheimer’s or dementia and just turning 60.
I had nominal aphasia and terrible memory problems prior to diagnosis. I still have both occasionally but nowhere near as bad as before my injections started. If you are worried about dementia go on the altzeimers site - take the test and you will see how far away you are from dementia. My mother had altzeimers and believe me it’s a long way from simple brain fog!
Well, Alfabeta and Sadie97 - that's 2 of you, and over the years I have read similar posts. Yes, hallucinations (auditory, visual, olfactory) along with everything else, including anxiety (who wouldn't be anxious?)- but this is very difficult to discuss with GPs/ consultants, and you may well choose not to. I would imagine there are precious few (cherish them !) doctors who would believe in a link between hallucinations and B12 deficiency, whether we all related our experiences or didn't.
I found it easier to talk about my experiences because there seems to be no real stigma attached to sensory confusion if it involves a local supermarket that apparently smells of raw sewage ! Perhaps it is also part of recovery because I cannot remember having this problem prior to injections. Maybe the brain trying to make sense of signals that are weakening as B12 deteriorates again ? (Pure guess).
Visual hallucinations are probably far more difficult to laugh off, and may cause far more concern from GP.
PS: I had an MRI brain scan a few years ago, when I was about 58, and surprisingly have a normal brain - "for your age" !
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