Numbness

[MarcelaS]

I have recently been diagnosed with Lupus, went to my GP as my lips and left side of my face is numb, he totally dismissed this. Is this another symptom of Lupus?

[Purpletop]

Is it totally numb, I.e. You can't move it or if you run a finger across it you don't feel it? Or is it that you have altered sensation coupled with tingling/pins and needles?

If the former, id get the GP to send you to a neurologist. The latter is likely to do with neuro symptoms of lupus, I have the same on/off, sometimes associated with migraines too.

[MarcelaS in reply to Purpletop]

When I touch it it feels odd, I'm under a neurologist for Papilledema and intracranial pressure. Just don't feel like my GP is taking things seriously

[Purpletop in reply to MarcelaS]

Thats because he's never heard of it and doesn't know what to do. It sounds like lupus neuro symptoms - you could go speak to the neuro and see whether the Intercranial pressure could cause this. Or see the rheumy to check whether it is the lupus.

I find that mine comes and goes. It is scary when it happens because we all think of strokes but it does go away without any apparent reason.

How long have you had it?

[MarcelaS in reply to Purpletop]

I have an appointment booked with the Neorologist on the 19th, it started over Christmas , yes very scary. I found out from my rheumatology that I tested positive back in 2011, when I questioned my GP he said I didn't need to know as the levels were low !!!

[Purpletop in reply to MarcelaS]

Unbelievable

[MarcelaS in reply to Purpletop]

Yep, feel quiet isolated with all this 😔

[Tinky52]

MarcelaS I too get that and they told me that it could be caused by the nerves in your mouth and certain teeth. My dentist said if you have problems with your teeth, this could cause numbness, and go from your chin to your cheek but only on one side. Hope this info helps. Good luck! xx

[MarcelaS in reply to Tinky52]

Thank you Tinky52

[Ruth_lderry]

Hi ive never heard of this with any lupus condition. If I was you I would contact your neuro doc and see if he can see u.

All the best

Ruth x

[MarcelaS in reply to Ruth_lderry]

Thank you Ruth x

[Hidden]

I had three episodes of this last year but in my left side and my left arm was affected too - almost paralysed briefly. I had checks for strokes but in the end my neurologist diagnosed it as FNE - Functional Neurological Episodes. He told me this is because I'd suffered from physical trauma from illness/ drug reactions etc and my brain had closed down briefly in response - like a very good fuse box responding to a power surge. I liked this analogy - it made a lot of sense unlike the formal term, FNE.

I also have tingling in my gums, lips, numbness in my nose and left eye almost every day - it worsens as the day wears on. I've not got any positive antibodies presently so my rheumatologist has told me it can't be connective tissue related. Sorry not to be very helpful re Lupus but interesting to read Purpletop's take on things as always.

[MarcelaS in reply to Hidden]

Thank you for your reply, my husband keeps wanting to rush me off to the hospital. He thinks I'm having little strokes, bless him x I will talk to my neurologist about it x

[Hidden]

Well I wouldn't take anyone else's experiences and apply them to yourself because strokes are more common than neuro lupus . It would be awful to miss mini strokes so best get checked out as your hubby suggests I would say. X

[LupusLady74]

Sounds like you need a second opinion and a different GP. Glad you're seeing a Neurologist.

[EOLHPC]

My version of a possibly similar numbness affects the right side of my face/head (also my right leg & foot). I've been managing this since my early 30s, way before my infant onset lupus diagnosis was recovered 5 years ago in my mid 50s. in the decades before my lupus was recognised, various doctors & consultants thought my version of this was related to my spondylosis, or that I had MS, but neurology & ortho surgery determined these were not the causes of my numbness.

Anyway, I had this numbness for decades, constantly, but the severity varied (flared) depending on how poorly I was generally. Now rheumatology look at this numbness as being one aspect of of my multisystem connective tissue illness. I think they feel justified in taking this view partly because we've established that both this particular version of my numbness & also my other chronic neurological/cerebral symptoms all respond well to my cocktail of lupus meds (hydroxy + myco + pred).

However, I also have been living with severe chronic peripheral neuropathy-caused numbness in hands & feet since my early 20s. Aside from lifestyle management, it seems that hydroxy has gone furthest in helping to somewhat damp this version of my numbness down

Hope something in there is useful to you. Wishing you success in your consultations

🍀 Coco

[ac489]

I went to hospital last week with these exact symptoms thinking it was a stroke. They keep me four days and did a lot of test and found thyroid malfunction. No sign of stroke in brain scan and mri. Apparently gp was reading my thyroid levels wrong and decreasing my synthroid when it was supposed to be increased so symptoms were getting worse instead of better. My husband finally took me to er because I I was dizzy and almost passing out. My face was going numb on left side as well as my hand and left arm/side and my brain was very confused. Doctor at hospital increase my med and I am starting to feel better but still weak and shaky. they said it would be a few weeks for medicine to start working where I will feel better and I need to see rheumatologist.