Numb face

[MandaH1]

Hi. My face on the right hand side keeps going numb. I was sent to the hospital last week for tests to rule out a stroke. Does anyone else ever get this. They did say it’s probably trigeminal neuralgia but I disagree as this is a painful condition. I’m worried it maybe ME or MG? I have SLE. Thanks.

[Hidden]

I was just about to post here about this myself. But I thought I’d respond to you first because I’ve had a numb face for over 2 years now - initially just the left side but now all over including around my eyes. My oral consultant called it Myofascial pain and arthralgia associated, in my case, with Sjögren’s.

But the Sjögren’s expert I saw a few weeks ago said Trigeminal Neuralgia is much more specifically associated with my neuro type of Sjögren’s.

Just been to my dentist for routine check up - who is concerned that a very old root canal sitting on my trigeminal nerve is looking unstable so major dental work is likely for me soon. He wants me to discuss this with my oral consultant at next apt in December. So I’m suddenly wondering what’s causing what and feeling I’ve got a ticking time bomb in my roots that the advanced numbness may just be masking.

It’s just another of these chicken or egg comes first type situations but I tell you in case it’s relevant to you also.

[Angiedj]

I get this too!! Reported it to my GP twice now and both times sent to Hospital where they decided I'd had a TIA - the last time I argued the case and was told as they were uncertain as to the cause, it would have to be written on my notes as another TIA!! It seems to happen when I'm tired, not the usual fatigued, but like a warning sign to take it easy! I'm diagnosed as UCTD and rarely get to see a consultant (I do have a Meningoma too but the numbness was ruled out on that front as it apparently would happen on the other side of my face if that was the cause). My GP even made me go for tests regarding epilepsy, which luckily all returned as normal. I don't tell anyone now, probably naughty of me, I just log time, dates, how I felt etc to inform my consultant if he ever sends for me again!!! I hope your luckier than me in finding a cause. Hugs xx

[Melba1]

I get this on my left cheek. Funny how we all get different diagnosis for a similar thing...

I would agree that mine is not trigeminal neuralgia as think that is supposed to be very painful and a shooting pain? Mine is more like a gentle pins and needles, like my cheek is in a container of fizzy drink, not painful at all just weird!

My neurologist said it's part of hemiplegic migraines and I do sometimes get it as part of this - including my left hand and left foot also become temporarily paralysed and/or pins and needles. However, I've also been recently diagnosed with a flare of NPSLE and this 'fizzy' feeling in my cheek (and chin and lips) was permanent for 3 months rather than the temporary of a migraine. It went within 4 days of high dose steroids and has come back in the last week now I've weaned myself down to 10mg. It seems to go away when I'm on 12.5mg and above and come back on lower (I have been 'playing' with the steroids - making my rheumy very cross as he wants me to stay on 20mg for a long time - but I think it's important to see which symptoms come/go at different amounts and I don't like taking them!)

Does the cheek bother you in itself or do you feel it's a sign of a bigger problem? I don't mind mine feeling funny now I'm used to it but do think when it came at the same time as all the other weird neuro things it was another sign of the lupus being active.

You should be being seen by a consultant though. Can you ask your Dr to refer you or do you have one who just doesn't see you regularly?

x

[Jo883]

Hi,

Yes I get this. I am actually having an episode as we speak. This flare up has come on suddenly. The right side of my jaw goes numb, along with my teeth. My right eye goes funny and drops (ptosis) and my cheek also feel numb. It is often accompanied by speech problems with me, sometimes my facial muscle drop and I look like I’ve had a stroke. It will get worse if I talk and also I am very noise sensitive when I am like this. I feel very weak and my legs give way and feel like they are rubber bands. This to me is more like a neurological flare up. I also get trigeminal neuralgia. But atm I have no stabbing head pain. I had a really bad episode of this in 2013 and ended up half paralysed in hospital. I would like to give you an explanation of what causes this. But I can’t. I’m seeing my Rheumy tomorrow and just hope that I am able to make it to my appt. I have been tested for Myasthenia Gravis more than once and it’s negative. It is something I have learnt to accept as part of my flares. I wish I could be more help. Xx