Numb face, tongue and lips? UCTD

[Sunflowergirl94]

Hi guys,

I've been diagnosed with UCTD for about a year now, mostly manifesting as lupus-like in symptoms. However I've got a bit of a weird new symptom developed over the past couple of days that I've never experienced before... whether it is UCTD or something totally unrelated, I'm not sure but would really appreciate some advice!

The tip of my tongue is really numb and tingly (kind of like when you've burnt it, which I haven't), as well as my bottom lip. My cheeks also feel a bit numb... very weird.... has anyone experienced anything like this?

Thank you!

Sunflowergirl XXX

[Hidden]

Yes I have this most of the time now - no one has yet been able to shed any light on it however. I do have similar issues with my peripheries though. Horrid and weird - you have my sympathy. Twitchy

[AnnNY]

Yes, I do get this with my UCTD, too. However, I went to a new rheumatologist who did an incredible work up on me. She found I had antibodies to antiphospholipids (one rarely tested for). She put me on Elequis and Plavix, and I now have only a very faint sensation of numbness rarely. She also did a panel on sjogrens, which was positive, although it is new panel, so not always accepted. (Also, very dry eyes found on the Schirmers test.) But I have had weird problems with my nervous system for a long time, including peripheral neuropathy. (This has been seen on my EMGs, too.) One interesting test she did was to check my arms, leg and face for cold. Strangely, it seemed to me, I felt the coldness more on my face than on my arms and legs. She also noticed my balance was off, which I really didn't quite realize, but that has gotten better with the anticoagulants. I am usually ANA negative, but she told me that there is a theory that a lot of ANA lupus is actually APS. Anyway, she is really a researcher and this all very controversial, since I never had a blood clot or a miscarriage. However, I'm really glad I found her, since the blood thinners seem to be helping. And with brain fog.

It used to be if you had a non-conforming type of APS you could see Dr. Hughes in London (my rheumatologist used to work with Dr. Hughes), but now Dr. Hughes has retired, so I think it will be very difficult to get a trial with anticoagulants as Dr. Hughes recommends, unless you test positive to the usual antibodies they check for, and maybe not then unless you have had a stroke or a DVT.

I don't know if you can ask your GP to check for the antibodies listed on the Hughes Charity website, but if you can, you should at least try that.

Oh, and I also had a new MRI on my brain, after many MRIs, and it is still fine.

You have only been diagnosed for a short time, and I have had this for close to 40 years, so I hope I'm not scaring you. The good news is that my MRI is fine, even though my nervous system has suffered from my autoimmune problems. I hope in the future more rheumatologists will absorb the research of Dr. Hughes, and this will be something else that can be tried more easily.

Oh, and please tell your doctor about this symptom. It wouldn't be a conventional stroke, but there is always that possibility. (I kept self testing myself for a stroke, but from that I was pretty sure it wasn't one.)

[Barnclown in reply to AnnNY]

so glad of your update ann: good news!!!!

you're reply is making my day start with a smile

I'm getting somewhat similar cutting edge insights from the research rheumatologists i see for my BILAG reviews...fascinating & encouraging...

🍀🍀🍀🍀 coco

[AnnNY in reply to Barnclown]

Thanks, Coco. I traveled almost 2000 miles to see this doctor, had a particularly bad trip home, went into a flare, started taking prednisone, then got a cold, so I really don't know how I'll be doing in a "normal" state. But I had been noticing that the facial numbness had been much better. So sorry Sunflowergirl if I hijacked your thread. Maybe I'll post about this more when I really feel I know how well this is working for me.

[Hidden]

Yes I have this too,started a year a go,rheumatologist wants to give me steroids,Dr gave me antibiotics,dentist said no problem with mouth or teeth ..just having to put up with it, drives me nuts !!!

[Barnclown]

i get numbness in my face & mouth too. my version of this is mainly on the right side. it's always present to some degree, and when my neuro cerebral symptoms are flaring (in my dysautonomia) it's more severe. i find that the meds in my daily combined therapy treatment plan do help to minimise this numbness: especially myco cellcept & prednisolone

I hope you'll let us know how you get on re figuring this out & treating it

🍀🍀🍀🍀 coco

[Sg52675]

Sound very common with UCTD , im living with it for 5 years ...