Facial numbness

[Angelwings1234]

Hi I was diagnosed with MCTD but I am convinced I have Lupus. Low white blood cell count, my antibodies are off range. I am suffering from facial numbness roof of mouth tongue cheeks nose lips it so distressing but my rheumatologist says it’s not my condition causing this and my neurologist has no answers as MRI hasn’t shown any issues. Please can anyone with lupus associate with facial numbness as part of there condition. I’m desperate for answers and someone with similar symptoms to understand.

[KayHimm]

Yes. Any other neurological symptoms? Nausea? Dizziness? Other sensory feelings? Headaches?

Do you know if you have anti-phospholipid antibodies?

These symptoms are very hard. And very to figure out what is causing them.

K

[Angelwings1234 in reply to KayHimm]

I’m not sure about the antibodies ? I really appreciate you taking the time to reply.

[Josiah150767]

HiI have some facial numbness around the side of my mouth and twitching around my eyes which gets worse at night. I have nerve pain mostly in my legs which I have had for the past 15 years. The numbness started last year after a bad prolonged flare and bad reaction to my dose of hydroxychloriquine being put up. I see a pain specialist privately and he has told me that the nerve damage is due to inflammation in the body which I associate to lupus as it has got worse after the flare that I had. ( I was left unmedicated for 5 months) as apps kept getting cancelled with rheumatologist. I can’t say what you are experiencing is the same as myself and also pain specialist adviced me that nerve damage wouldn’t show up on a scan as it’s microscopic. I hope you can get some answers

[Angelwings1234 in reply to Josiah150767]

Josiah I really appreciate you taking the time to reply. I have had my hydroxychoriquine also increased from 200mg to 400mg in the last 5 months and my facial numbness has gotten worse I wonder is it a coincidence or could that be the cause. Thanks again for your thoughts.

[Josiah150767 in reply to Angelwings1234]

HiI can’t say for sure, but I would check with your go or rheumatologist. I reacted about 2 days after my dose was put up. Bad and itchy rash on my face and neck, my face started to swell and I felt awful. My gp wasn’t any help at all. It took weeks to get relief once I stopped, but as I said earlier I have been left with these symptoms

[Angelwings1234]

Thank you so much for taking the time to reply. Your link was most helpful. 😊

[miccika1]

You are allowed to have more than one disease at a time. You dont need to have everything connected to you autoimmune condition, you will be getting other stuff too.

[gemim]

Hello. I have SLE and Sjogrens' syndrome . Was first diagnosed with SLE 23 years ago. I am on azathioprine - no steroids as I cannot tolerate them. About 6 months ago I started having tingling/numbness on the left side of my face. Then in my left leg and a month or so later in my right leg. In the process of having it investigated. Have had an MRI and there was some concern initially from the radiologist's report that it might be MS but when a team of neurologists looked at the scan they decided it was not suspicious of MS. That off course does not tell me what it is! I'm waiting to hear back form my neurologist. Not sure if that is helpful for you but it does seem that these neurological symptoms are not uncommon with lupus and the associated syndromes. Gemin

[Jmiller623]

SLE and aPL positive on hydroxychloroquine and IVIG. Facial numbness and tingling were one of my first worrisome events. My whole right side of my body felt heavy and swollen as well. Will really never know what caused it but like KayHimm, we both have a lot of nonspecific neurological deficits including dysautonomia. MRI of the brain is always squeaky clean for me. No one really cared too much about it.... I still have residual numbness on my right cheek.... until my eyes were affected. Once my vision started blurring and optho found movement abnormalities, that bought me IVIG for peripheral cranial motor neuropathy. This has helped most with my neuro problems but is very hard to get approved unless a motor component is affected by nerve dysfunction. For some reason, docs don’t care too much about sensory.

Hope this helps and you find some answers soon! Sending hugs. ❤️xx

[KayHimm in reply to Jmiller623]

Hi !

Not surprised by your response. Do you think they will ever treat with statins preventatively as with someone like angelwings where things are unclear? I am going to ask neurologist Monday if he thinks the fact that the stroke doctor put me on statins is what has kept my MRI unchanged.

I was surprised angelwing’s neurologist was so certain the numbness was not related to CTD. I never was responded to with certainty like that. And then my MRI changed. The symptoms before the change were from the same cause, right?

Great to hear IVIG is powering on!

🥰 Kay

[Jmiller623 in reply to KayHimm]

I don’t think he/she can say that with 100% certainty. I honestly think it’s like a migraine of the peripheral nerves. I do notice when things aren’t going well, my sensory stuff and neuropathies act up a lot more. I still argue it’s poor micro vascular circulation causing small fiber ischemia. And sensory nerves would be the first to get hit because they travel the furthest and are the smallest.

I honestly think statins are good for anyone with any type of vascular problems. Has very low side effect profile and has shown benefit in preserving cognition in those at risk for decline. We always thought they caused a decline in cognitive function but we are finding some people benefit and some don’t when it comes to cognition. I honestly don’t think it’d hurt to have a statin on board in your case since it’s best prevention has been for stroke even in comparison to coronary artery disease.

link.springer.com/article/1...

Off of atenolol for over 3 months and going strong. Heart rate steady in the 50s!

[KayHimm in reply to Jmiller623]

Wow - this is so interesting. Many of us have these weird neuro symptoms. Hmm .. something sounds right about that migraine of the peripheral nerves. For indication for brain MRA/MRI neurologist wrote “ history of small vessel ischemic disease, CTD, aPL, migraine.”

So are you proposing that the brain acts nutty because of ischemia and influences the peripheral nerves and that causes bizarre sensory stuff like numbness and tingling?

Sorry @Angelwings1234. I am not hijacking your post. These things may be related. Don’t want to question your doctor. But just wondering why they are so certain about the cause.

@Jmiller623 - wouldn’t your theory be consistent with Professor Hughes’ theory that APS patients get hypoxic with high altitude? I mentioned this to the stroke doctor (and others!). She thought intensely about it. Mumbled something about “it couldn’t be clots (in my case) and that my brain was sensitive to high altitude. Hey, I got that!

So many lupus and others feel in the dark with the neurological issues. Maybe your insight is needed!!

🥰 Kay

[Jmiller623 in reply to KayHimm]

Totally possible. The higher the altitude, the less oxygen and with less oxygen, vessels have a tendency to squeeze down even tighter. So I can totally see this causing ischemia as Prof Hughes has proposed.

TwitchyToes and I had a long conversation about this and the cycle between neurovascular dysfunction, ischemia, spasming and further dysfunction of blood vessels esp the tiny ones. She had a good presentation on it by a female specialist.

I’ve lamented before that lupus has different flavors. The lupus nephritis flavor is the most classic like vanilla but some of us are Neapolitan ice cream. So much mixed in at once, it’s hard to tell vanilla from chocolate from strawberry. There are some companies trying to figure interleukin and cytokine profiles in order to predict flares. With new technology and data banking farms, we have to be able to figure something out about what makes us different and the same.

[KayHimm in reply to Jmiller623]

A lot to think about ..

[KayHimm in reply to Jmiller623]

Oh, I was put on statins by the stroke doctor about five years ago. I thought it was because of family history of heart disease. Just last week learned of this micro vessel stuff and that the treatment is statins.