About 5 minutes ago, I just experienced this weird tingling sensation in my tongue. It started on my scalp (behind my left ear and on the crown of my head) and then this tingling feeling crept up the back of my throat and onto the left side of my tongue. It wasn't painful, just strange. This is the first time I've experienced anything like this and I'm a bit worried that it could be related to my low B12 levels.
As soon as it happened, I googled it (I know, you're not supposed to do that but I was panicking) and it said that: "Numbness or tingling ("pins and needles") sensations in the tongue, medically known as paresthesia of the tongue, most commonly occur due to damage to the nervous system."
Is this true? Has anyone else experienced it?
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KCxo
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Hi, it could be but it's hard to say for certain. B12d make you prone to all sorts of weird nerve sensations, many of which will go again if you get enough B12 and supporting supplements soon enough.
For me personally, similar to what you describe happens quite regularly.
Like ants crawling over your head. Tongue tingling right in the middle. Used to think it was drinking hot drinks as the sensation can sometimes feel like ive burnt it.
One of my main symptoms is a tingling tongue. Have it at the moment and my injection is due on Friday. It is a weird sensation, but I am used to it and it does go.
I have this tingling had it for over two years it's awful they have done every test you can think of it's getting worse it's over my whole body but much worse in my head my face is swollen now my fingers swollen I am so worried but nobody seems to know what it is I have been on Gabapentin the maximum dose for two years now. The only new symptom that I have is pain in my lower back they are sending me for another MRI and nerve conduction tests but I already know the saying comes up with nothing and it will be justkeep taking the gabapentin to mark that mask the pain
Yes I have tingling in my tongue. I seem to need a huge amount of B12 and for me tongue tingling is a sign that I need more. the tongue tingling stops after I get B12. I also have splits in my tongue.
"I googled it (I know, you're not supposed to do"
If I hadn't googled my symptoms I would never have discovered that my symptoms were associated with B12 deficiency.
I didnt know i had it (or should that be lack of it) until i had bloods done. But since then i have read and learnt much from everyone on here and the symptoms i had for at least a couple of years beforehand actually scream b12 at me. If i had googled i might have saved myself.
I have strange tongue sensations, also mouth ulcers and a swollen, sore tongue. NHS recommendations are for B12 injections every other day until symptoms disappear. Has anyone found a GP that will follow these guidelines?My oncologist is prepared to give me a B12 injection every month when I visit for my review. Unfortunately although I have printed off the NHS recommendation for my GP, my GP has not yet complied with it.Why is it SO difficult to get B12 injections, that only cost the Health Service 69p per throw? I am so exhausted that by 12 noon my day has literally finished!
None of my B12d symptoms are evenly bilateral - quite the opposite!
B9 deficiency also tends to do the same to your tongue but make sure your B12d is sorted before you supplement with B9 as B12d is more serious and the symptoms can be masked by B9 supplementation and technically, in accordance with BCSH guidelines, your B12 treatment should be tailored to eliminate your symptoms.
I sometimes have the "crawling" sensation on my scalp around and down the side of my neck. Just another reminder that it's time to take a bit more B12 to get my levels up. Alost none of my symptoms are bilateral either unless I'm in really bad shape.
What are your current B12 levels and what sort of treatment are you receiving?
I was tested 2 weeks after receiving my first loading dose and it said my levels were at 93. Right now, I'm almost at the end of my second loading dose and will be getting weekly injections for the next month.
If you are UK based and having neurological issues (and it appears that you are) they need to be giving you injections far more frequently - every other day until symptoms improve I believe.
Aside from that your levels are horribly low and it is no wonder that you are feeling they way that you do. Assuming that your physicians have checked for anything else that may be a contributing factor you may consider additional B12 supplementation. It's the only vitamin that you can't possibly take to much and "overdose" on it. It is water soluble and will merely be flushed out in ones urine.
Please consider B12 sublingual lozenges, patches and oral / nasal sprays or self injecting and don't be afraid about taking too much. The serum B12 level isn't perfect and doesn't take into account what is happening at the cellular level but you are experiencing effects that are the result of nerve damage and quite frankly a level that low is frightening.
I was at 302 with tremors in my arm, leg and foot along with brain fog, absolute fatigue, depression, tingling, tinnitus, leg, hand and foot cramps and a host of other ailments. Once I began sublingual B12 in high doses for several weeks the symptoms started to recede and now are largely gone. In my case it was 35 to 55 mg daily (that's seven to eleven 5,000ug lozenges throughout the day that started to make a difference. When tested for serum B12 when I finally felt "normal and alive" the reading was 4,000+ - off the charts for the test. On an ongoing basis I take much less now but still test at levels of 2,000+. If I get below that for even a short time the neurological problems come back right away.
Try to keep the outside stress levels down, listen to your body, don't over exert until you can build up to it and stay away from alcohol. All of these things are an absolute DRAIN on my body's use of B12 and I'm back in a pickle again.
Take care and remember that you know how you feel and that you have to take charge of your health. Getting your B12 levels up won't hurt at all and it might just help you out.
I did phone my GP today to try and make an appointment regarding the tingling and worsening brain fog, clumsiness, dizziness and exhaustion... but they were fully booked and said I'd need to wait until next month to see her. I'll just have to keep phoning up in the morning's and check to see if they have any cancellations.
The nerve that runs the vocal chords, maybe the tongue and throat, I believe is a branch of the vagus nerve and goes from the brain down to the heart. Due the a freak of evolution in mammals it makes a loop around the Aorta and comes back to the voice box. If its myelin sheath has been damaged due to the B12D, could movement / activity in the chest / stomach area show up at virtual issues in the throat?
Once you get B12, folic acid, vit b6 then repair of the nerves may make things more sensitive until the brain recalibrates to the stronger signals.
It may be a symptom you can use to assess either the severity of your deficiency or the progress of the repair.
Keep a logbook and assess a score for each symptom. Monitor changes along with your food and meds to see it anything you eat is related. There is a delay of 3 to 48 hours because the gut is involved.
This also gives you something positive to focus on rather than worrying, which consumes lots of B12.
This has been of great interest to me as I am on B12 injections, and have been for two years now. I had never considered the creeping sensation on my scalp or tingling tongue to be linked to the B12 levels. I think I will start to keep a diary to monitor if it is happening when my levels are low before my next injection.
Yes it did go away after getting regular B12 injections. My GP has been good and trialled me on more frequent injections too, and that has made a huge difference to how I feel.
My tingling tongue went away too on methyl B12 but I’ve had severe acne since taking B12 that’s made me extremely depressed as there’s now scarring from the acne and bleaching and burns from the acne creams so I wish I never took b12 now.
How long have you been on B12? Some of the side effects that appear when you start treatment will disappear after time. The danger of not treating low B12 is permanent nerve damage.
I’ve been on methyl b12 for 2 years. I’d say the acne is getting worse. What would be classed as low B12? I want to get retested off supplementation...but how long do I need to wait?
What would you like to ask about my tingly tongue?
I rarely get problems with tingling in tongue now although I still have splits in it. I have found articles in past that link "Geographic tongue" to possible B12 deficiency.
My symptoms come back very quickly after an injection so I also take sub-lingual B12 as well. If I stopped taking B12 for more than a couple of weeks , my tongue would be tingling and I would also have tingling and pins and needles in my spine plus lots of other symptoms.
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