neuropathy, pins, and needles in the face!! Has anyone else had this?

[brenanddave]

I have been experiencing this randomly and faintly over the past 7 months. Now I have been receiving b12 shots for 8 weeks, along with hot aching pins and needles in my feet and hands I woke this morning to way more intense pins and needles on my face. Both sides of my face and across my jaw. From what I have read this does not seem so common. I would love to hear of anyone else that has had this symptom! Thank you!

[Nackapan]

Yes I had alot over my head ,jaw ,and scalp.Then numb patches .

Most resolved.

Still get a numb of tingly feeling in my nose if in superficial light.

Jaw and scalp still get pains but not as severe as at the start.

Did many yawning stretching like movements on waking to try and ease it .

My feet used to burn.

Hands didn't but had cramp like spasms.

Head more of a problem for me.

I think b12 'fires up ' our nerves .

All felt chaotic and painful at times.

All part of healing .

Hang in there.

Probably more common than we think .

Just not written down many places

[brenanddave in reply to Nackapan]

Thanks for sharing that with me! I'm trying to work out what this all means for me. Do you have any other auto immunes if you don't mind me asking? I am just wondering if having this particular area flaring up is connected to any specific condition.

[Thrones12 in reply to brenanddave]

before I started b12 shots,I have p.a, I had trigmenal neuralgia down left side of face,it was behind ear in gums and all over skull I also had carpal tunnel in both wrists ,not ideal for a hairdresser lol, since starting injections these have disappeared but I still get random bouts of pins and needles out the blue so I usually increase my shots as I find over activity when I feel well tends to deplete me very quickly ,it’s that vicious circle of how I deal with the good days I guess.no consolation I know but your not alone in this.

Can you increase your frequency of shots? I find this helps espec in times of stress..best of luck

[brenanddave in reply to Thrones12]

Thank you! That is very helpful to know.

[Nackapan in reply to brenanddave]

No .Presently nothing else going on .

[topazrat]

I used to get it a lot before diagnosis. Since being on jabs it has become much less - usually only if I am tired or run down.

[brenanddave in reply to topazrat]

Thank you! Yes, I notice it more when I am tired or stressed.My feet are really the worst and every night at the moment.

[Orchard33]

The only numbness/pins and needles I experience is very mildly on one side of the my face and down one leg. No rhyme or reason to it, it seems.

[pitney]

yes down my right side ,face,arm and both hands especially when i am tired😀

[PhilAB]

If you don’t mind me asking, but how often do you inject?

[brenanddave in reply to PhilAB]

About every 3 days when I can. We have a national shortage of b12 in NZ. It's ridiculous! It has been this way for 3 mths. I have ordered some from Australia. Hoping it will be here soon.

[PhilAB in reply to brenanddave]

It is not ridiculous, it is all part of the plan. It's the same in the UK supply is slowly being cut off. It will not be long before we can no longer get b12.

I was going to suggest inject daily, but as you have no supply that is not really possible for you. Can you not get from Japan?

[brenanddave in reply to PhilAB]

I have an order for 30 from Australia that has landed here and is at the distribution center. Hoping it will get to my early next week. Then I will having them daily.

[tomdickharry]

Not quite the same, but close. My facial symptoms are almost like something crawling over my face, at other times like having a dental anaesthetic wearing off, feeling returning. Usually along the nerve path.

[brenanddave in reply to tomdickharry]

Actually! You just described exactly what I am feeling. If you don't mind can you tell me how long you have had this.

[tomdickharry in reply to brenanddave]

A few months after COVID was used as an excuse to stop injections. It was one of the first symptoms I got. Soon followed by brain malfunction, falling over, dropping things, etc.. Only stopped when I managed to get ampoules for injection. So I regard it as a first sign of B12 depletion.

[brenanddave in reply to tomdickharry]

Thats interesting. I can relate to that. I hadn't connected the balance and dropping things to it.

[tomdickharry in reply to brenanddave]

Yes, symptoms of deficiency are many and varied, we're each different. An internet search lists so many possibles. However, it's difficult to pin down as so many symptoms are vague or can be associated with some other disorder. Sadly, that gives GPs their excuse to fob off sufferers.

[brenanddave in reply to tomdickharry]

Its just unbelievable that they just stopped everone's treatment for b12 def. Like taking insulin off diabetics. How did they get away with that?? Its a national disaster!!! I'm so sorry that that was done to you all!! Mind you...We have had a shortage of them in NZ since at least when I was diagnosed 8 or 9 weeks ago. I had to phone around all the pharmacists to find what I did. so not been having them regular enough really. Its outragous. Felt like we were living in a third world country

[Litatamon in reply to tomdickharry]

Oh man, that makes me so angry.

Relieved you got some supplies.

But still bitter.

[Wwwdot]

Hi brenanddave

Yes I get this on my right hand side of my face originally and now it’s in my left. Since having the B12 it feels different to pre B12 but hard to explain how but here goes !

Pre B12 the pain was on the surface and sensitive to touch and draughts. Now it’s still on the surface but it’s as if the tingles have roots. Not sure it that makes any sense to you!

However although it got worse for a while after starting B12 I have not had this symptom for about 4 months until a few days ago. It’s ok today though when I woke up - so I am not sure but it could be healing pains as I call it.

Hope it all starts to settle down as the B12 gets to work. 🤗🤗🤗

[brenanddave in reply to Wwwdot]

Yes!! It does make sense to me.I had one day that I woke up to it being really intense and felt just as you discribed. I also wondered if it was the b12 working on it. It hasn't felt as bad as that in the last couple of days so here's hoping!!

[dot-dash]

I had it recently for a couple of weeks, after my tingling spread up my limbs from my hands and feet - central and front of face, roof of mouth and tongue. This about 8 months into EOD injections. No other autoimmune conditions. It's still there in the background. I've just taken it as a tidal nerve effect - comes in, goes out...

[brenanddave in reply to dot-dash]

Yes! Mine comes and goes. Crazy the amount of strange things PA effects. I guess we have nerves all over the body so why not. I am somehow feeling better that it is not just me with this and to hear it can go.

[Seabird4]

I have periferal neuropathy & loss of reflex in my feet & legs. It was only a funny feeling in two toes but progressed before I was finally diagnosed with PA. Neuropathy in feet has improved but not resolved. More noticeable in Winter. I also have facial numbness, upper face across nose. Again has improved with injections but Winter weather adversly affects sensation. I have asthma & hashimotos too. It is worrying when you haven't control over it but keep going & hopefully it will resolve enough to be manageable & maybe dissappear.

[brenanddave in reply to Seabird4]

Thank you. And good luck with yours. It really helps to have the group to chat with about these things. Especially as I am new to it all. Had symptoms for a long time but put most of it down to stress.

[Seabird4 in reply to brenanddave]

The forum is invaluable. Yes put down to stress well that sounds familiar. Mine was attributed to grief & I was offered antidepressants...I refused and kept researching with info from this forum. I requested the GP to test Intrinsic Factor which was positive & thankfully I have my injections in place now. All the best

[Rexz]

Yes, Back in 2020 about 3 months into beginning weekly B12 injections of 2000 mcg Cyanocobalamin I began experiencing tingling on the right side of my face, right side of tongue, right jaw and my right fingers. That lasted for maybe a couple of weeks and then one day the entire right side of my body from head to toe, including my torsoe, went completely numb. Weird and Scary to say the least...I spent the day in emergency and they determined I had no stroke but they did not know what was happening. At that time I had been diagnosed as B12 deficient but this episode is what got me to a neurologist and hematologist who diagnosed me with PA. I was pretty much bedridden at this time and could not walk very well or do many things where you need some tactile sense like hold a glass of water or brush my teeth with my right hand as there was no feeling. A few months after this I switched to Methylcobalamin at the same dose as I had read that it is most beneficial in helping improve neurological issues resulting from PA. With this over a period of several months my condition began to improve and today mostly the numbness is gone with the exception of some residual in my right foot and two fingers on my hand. I presume those nerves are permanently damaged as they've not improved in over a year. If I knew then what I know now I would have significantly increased the period of my injections to maybe every other day. Just to note my B12 levels were extremely low at 70 when all this started. I suggest from my experience is treat random tingling in your face, jaw, and tongue as very serious.

Best wishes, Rex

[brenanddave]

Thank you so much for all of that info! It seems to be coming and going. Sometimes it feels like the pins and needles are on one side of face and sometimes both along with jaw and inside of cheeks but not my tongue.