Numb lips

[Clare184]

Random question, I've always had mouth ulcers and mild glossitis mainly tongue looks smoother and crimped around the edges when I'm due an injection. For the last few days I'm finding things taste strange almost like there is a coating on my tongue and my top lip feels like when youve had anaesthetic at the dentist, it isn't numb but one side isn't moving as it should, it's only mild but feels really weird, planning to inject tonight so hopefully it'll go but wondered if this is something others get!

[Kat_88]

i have been under a lot of stress recently and i see my symptoms are coming back one by one! 2 days a go while i was talking i felt numbness in my face and lips and also limbs! Limbs were familiar, severe though, but after that i have the same feeling in my lips and tongue which feels very weird! I am on EoD SI, i hope it goes away soon, i feel a hell of numbness and tiredness after all this time of treatment again :/

[Clare184]

Well quick update in case anyone with similar symptoms finds this post. Progressed by mid morning to not being able to close my left eye properly and a wonky smile, that's definitely not normal been to GP sent to a and e have bells palsy. At least it should go away with steroids!

[Nackapan in reply to Clare184]

Oh goodness horrid.My daughter has had that and similar symptoms with low folate

[Sleepybunny in reply to Clare184]

Hi,

Did your GP/hopsital rule out the possibility of a stroke and tia (trans ischaemic attack or mini stroke)?

This can cause mouth or eye to droop.

NHS page for Stroke

nhs.uk/conditions/stroke/

To anyone reading this post....

Ring 999 if you suspect someone has had a stroke.

NHS page for Bells Palsy mentions strokes.

nhs.uk/conditions/bells-palsy/

I have read that B12 deficiency can sometimes be misdiagnosed as Bells Palsy.

I've also read that B12 injections can help people with Bells Palsy.

I get slight droopiness on one side of my mouth if I go too long without B12.

Have you ever been tested for Lyme disease?

Facial Palsy can be associated with lyme disease.

UK links about lyme disease

lymediseaseaction.org.uk/

lymediseaseuk.com/

"I've always had mouth ulcers and mild glossitis mainly tongue looks smoother and crimped around the edges when I'm due an injection"

I'm not medically trained but I suspect you need more B12 if your symptoms are returning before next injection.

[LouBee73 in reply to Sleepybunny]

Thank you! I've been having a numb left arm, LHS of face and lips lately too! I've been wondering what the hell it is?!!!

[Sleepybunny in reply to LouBee73]

Hi LouBee73,

I hope your doctors ruled out the possibility of a stroke and tia. If they haven't ruled it out maybe you could push them to scan you and test your homocysteine levels.

B12 deficiency can lead to raised homocysteine levels and raised homocysteine has been found to increase the risk of stroke in some studies.

I've read that B12 deficiency tends to affect the body on both sides although some forum members report symptoms on one side only.

I also hope they ruled out lyme disease and bells palsy.

I hope you're getting enough B12.

PAS (Pernicious Anaemia Society) have support groups in various countries.

pernicious-anaemia-society....

[Clare184 in reply to Sleepybunny]

Thanks sleepy bunny yes they sent me to a&e and had bloods done and Ct scan, steroids prescribed so hopefully will be on the mend soon!

[CrunchyMama777]

I thought I'd had a stroke when the right side of my face from my eyebrow to my throat went numb along with my right arm and forearm. It was B vitamin deficiency. Fast forward to treatment (It's been 16 months of shots and many, many supplements) and now my nose and or lips will go numb if I'm low.

Please note: B12 deficiency can do this stuff to you but so can it's sneaky little cousin B6. I'm figuring out that there's a holy trinity of B vitamins -- B12, B6, and Folate. They need each other to work right. If I don't get enough of all three in appropriate amounts then things go bad quickly.

I lost the feeling in my feet and I really believe it was from too much B12 in my blood. (And not enough in my cells.) I've been trying to manage it without supplements or shots (only because I have to.) And I've been eating beef liver pills, cricket pills, a pound of red meat a day, pork chops, and a can of sardines every other day. I also snack on cheese and beef jerky. I also eat at least two bananas a day for B6, eat cabbage for folate. Sometimes I still have to take a folate and occasionally a B6. I was taking about 5 B6 pills a day so this is working for me for now. It's been over 40 days without a shot now and I still teeter on the line but I'm figuring it out. When I get low I'll have a lot of symptoms quickly. I think my body's on high alert.

If I'd of known I was low on B6 as well, I think my treatment would have went much faster. I was taking a multivitamin (methylated) with B6 in it and I ate healthy with lots of chickpeas, rice, etc. but it wasn't enough B6 and I thought it was B12 I was still lacking so I kept taking more and more of it until it began making me worse.

B6 can do most anything that B12 can. And not enough of them and too much of them can bring about numbness. I've also had numbness in my throat that I thought was allergic reactions but now I think it was the Bs. I still carry an epi pen, though, just in case.

If I could go back in time knowing what I know now I would have started eating as much meat as I could hold back when I first figured out the problem. But I clung to my plant based diet. I've had over 40 shots and I lost count how many bottles of supplements. Now I have to eat meat and no one can convince me it's possible for me to get better without meat. I tried everything. I let myself run out of bananas and beef liver pills. That was a mistake. I started seeing things and forgetting everything and I had a low level headache for days. I got some more beef liver pills and I'm calling them my multivitamin since I can't have a multi right now. (Any B12 from a pill or shot makes my feet more numb now and I've almost got them back to normal.) They say you can't get too much B12, that you'll just pee it out. I disagree. I know what too many B vitamins can do to a person and it's not pretty.