Recently I've found that every time I'm on my feet for any length of time (I mean, more than 10 minutes) the right side of my face goes numb. Feels like I've been to the dentist if you know what I mean.
Does anyone else get this or have any idea what might be causing it?
Do you have aps. I have n this was definitely one of my symptoms
Regards diane
No I don't. At least all the blood tests for it are negative...
Me too...I have various chronic numbness syndromes going on. One of these is somewhat like yours except my version of this is present in any position, but worsens with standing up. Whatever this is, it has been affecting the right side of my face since the mid 1980s. Some medics have unconvincingly blamed it on my cervical spondylosis. Others on dysautonomia.
The myco + pred in my daily oral lupus combined therapy treatment plan do help damp this down, but it's always there to a degree.
My APS tests are neg too...but v experienced forum members have suggested seronegative APS.
If you figure this out, please tell us about it!
🍀🍀🍀🍀 coco
I just realised I posted about a similar thing a couple of months ago 😫and forgot I had. Except then I was getting a kind of a neuralgia pain with it which I haven't been getting now and it seems to only happen when I've been standing for a bit. Once it goes numb it can hang on for as long as 24 hours before it faded away.
These things can involve overlapping Neuro issues...my version certainly does! My right face numbness usually hangs around for days...before pred + myco it'd linger for months...but now I'd manage lingering facial numbness by increasing my daily pred to 10mg & tapering back down by 2.5mg per week until I get to my therapeutic dose (currently 4.25mg)
Yes I have been getting that for about 5 months now, it's really scary,I thing I have found out is that is stess related and it so unusual my doctor can't give me an answer,
I agree mine was blamed on spondylosis, I corrected my posture as best I could had physio etc pins and needles comes and goes but numbs hangs around.
I have had this recently and was getting worried about it , was planning on mentioning it to my consultant on 7th march . I think I have undiagnosed APS , I have had lupus for 15 years and had two large blood clots one in my brain and I have never been tested for it . Renal nurse took blood to test for it and I have not been given any results it's a joke .
have you joined the sticky blood support group on here,for people with APS?
I have this quiet often. Sometimes my lips are numb like you say as if I've been to dentist, I even dribble when having a drink. Asked for blood test for apps. Doctor said I had to have vit D test at same time it wouldn't let her just ask for aps. I asked when bloods were taken about this and she didn't think that they did that test. She said she would ask my doctor after end of surgery. Results came back they had only done vit D test. Going to docs tomorrow after pip appointment. Lots to look forward to!
Thank you everyone! I definitely have had my Lupus Anticoagulant tested repeatedly and it is negative. I know I've had my beta2-glycoprotein1tested as well but it was a while ago and it was negative.
I'm interested that some have mentioned spondylosis. I was thinking along these lines myself. Maybe that or an inflamed nerve sheath somewhere.
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