I tend to read more about folks experiencing numbness in arms and legs (and hands and feet), rather than in the face. I’ve had gradually spreading numbness in my face, neck and scalp and wondered how many others have this.
Facial numbness: I tend to read more about... - My MSAA Community
Facial numbness
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greaterexp
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The tip of my tongue goes numb sometimes but it goes away after awhile.
MS is so weird!
It sure is! Some smells will cause the same thing, so very weird.
I had that once!
Half of my tongue is numb. Does that count? It has been that way for almost a year, and my neuro ignores it. She says it is something I have to live with. I hope your numbness clears up!
I’d say it counts! I’m sorry about that. Does it affect your ability to move your tongue at all?
This numbness has been there for a few months, but it’s impossible to get my neuro to respond. I have a telemedicine appointment in February and will ask then. I don’t have any choice in doctors right now.
that is what sent me to the doctor the first time was the facial numbness on one side and i spoke funny felt like i had bit my tongue during the night ...talk to the doctor it may be a flair...take care ...
I have MRIs in a couple of weeks anyway, so it will be interesting to see if there are any changes.
I have an MRI in February. And I do experience the numbness in my toes. It starts in my legs and then ends in my toes at night when I am lying down. I agree MS is weird. 🤪
My toes are always numb! On the inside I think they're cold but when I touch them they're not. I wacked one hard by accident and broke a toenail which should have hurt but didn't. Go figure...
Right-side facial numbness was one of my first MS sx in 1994. My face was numb for about a week (like I went to the dentist numb too). Never experienced it since? So. . .?
I hope you get better soon. Do you have to wait for February? if it is a relapse steroids might help but sooner is better. I have an MS friend who has that. for her it was related to trigeminal neuralgia. Take care.
Waiting times right now are way out there, since there is such a shortage of neurologists here. She prefers telemedicine appointments, so an actual exam won’t happen. What a mess our healthcare system is right now.
ugh yes. you are in my prayers.
Thank you!
how ae you feeling today?
The numbness has been pretty much the same in intensity, but spreading for the past few months. It tends to wax and wane. Thank you for asking.
ugh greaterexp do you notice any pattern with food or sleep or stress or something else?
It seems totally random. I’ve been sick with flu for about 2 weeks and thought I’d see a change with the numbness, but it’s just the same. At least it didn’t get worse!
so sorry you are still sick but yes, it could always be worse.
I’ve had intermittently on the left and permanently on the right after gamma knife surgery for trigeminal neuralgia
You’ve told your Neuro, I assume?
I will do that at my next appointment in February.
I’m sorry about the numbness, but do hope you no longer have any pain there now. I can’t imagine that level of pain.
That was my first sign I had ms was numbness on left side of my face. It was so scary. But after a while it went away and I didn't go to the dr till many years later even though it would still happen from now and then.
Oh & it is annoying isn't it? That's the 1st symptom I had, my face & tongue were numb on the left side. It comes & goes & now I have twitching on my eyes & around my mouth. Numbness seems to be the thing on my body like my feet ,hands & different spots on my back. So far I haven't experienced it on my scalp. I hope it doesn't keep going any farther with you.
Thank you. It hasn’t bugged too much so far.
I've had facial numbness off and on for years. I don't always know when drool is leaking out of my mouth. I'll put my hand up to my chin and find that it's wet. This could be embarrassing but so far nobody has commented on it, for which I'm thankful. My nose is always numb to some extent. Sometimes I've looked in the mirror and been surprised to find the entire left side of my face looking drooping and withered, and my left eye veered off to one side. My mouth drooped on that side too. It was as if someone had taken a ruler and separated my face right down the middle--that's how obvious the difference between the left and the right was.
I’m sorry you have to deal with that. I’m very grateful that I don’t have any loss of muscle control.
I'm sorry you have to deal with this, and hopeful your neuro can help. I have permanent numbness in several areas but the most bothersome is on the left side of my mouth/chin where, like agate, I can't control the drool. I hope your neuro is more helpful than any of mine have been. Since it's been going on for more than 8 years, I have just learned to live with it, but it's embarrassing to lean forward, start speaking, and start dripping so I'm always with a tissue to catch the dampness when I can.
That must be very annoying. So far, this numbness waxes and wanes and doesn’t seem to affect movement.
I'm glad your numbness waxes and wanes, I truly hope it doesn't become permanent.
The worst thing about my drool is that it has created skin roughness on my chin on that side (probably because my pillow gets wet at night) and the corner of my mouth is often sore. I've given up trying to get a doctor to agree that it's MS caused, but I believe it is. It can't be merely coincidence that TGN, Tinnitus and this all began at the same time. Just because it can't be seen on an MRI doesn't mean it's not real. We who live with MS every moment of every day know more about how it affects us individually than most neuros ever will.
Amen! I’m sorry about the skin irritation. No fun.
About 6 months after I was diagnosed I noticed I didn't feel it much when I flossed or cleaned my ears (yes, I know the Qtips aren't supposed to go inside the ear canal but I hate water in my ears). My first neuro said it was not something he had seen in MS. I think he was relatively new to MS because when he repeated my MRI and I had new lesions in the cervical cord he transferred me to his partner who was an MS specialist for years. My legs also felt heavier at the time which is why he repeated the MRI.I hope your MRI and neuro visit go well! I just saw my neuro yesterday and things are mostly stable. A little weaker on the right but probably due to getting over Covid.
My neuro is young and has very little experience in MS. She’s very pleasant, but I do wish she had more experience. There is a dearth of neurologists in our area,
I have noticed diminished feeling when I floss on the left side, too. Strange feeling!
find another neurologist with more MS experience. I saw 4 neurologists until i was satisfied with the last one.
We just don’t have much choice in neurologists here, and I’m not excited about driving a long distance to see another. It would mean driving over mountain passes in the winter. Hopefully, we will attract a few more some day.
Like others have said, left side numbness is what triggered my ms diagnosis (I posted it on here or you can click on my image abs find my past posts).
I found that since m diagnosis the numbness comes and goes but not to the extent of the first time (face/neck/arm). Now it’s like puns and needles in my face but it goes from mild to significant - but tends to stay in the same original area.
Also when it doesn’t seem to be happening i to have slightly diminished sensation on my left in those same areas.
For my neurologist as it’s a past repeating occurrence it’s not new and if it doesn’t last 48 hrs there’s not much they can do as the damage to that nerve/area is done…the joys of ms.
Discovering the damage already caused and living with the damage already there…good luck 🍀 it’s more of an annoyance to me now than the panic of what the hell is happening before diagnosis.
Yes, I get it on and off in my forehead and scalp, it’s a very weird sensation but painless!
The numbness is annoying and weird, but I’ll take that over pain any day!
i get it and it's not like we choose numbness over pain but gee whiz i want a third option.
Yes. I agree. I had numbness on entire left side from forearm down when I was diagnosed; keep getting intermittently - but nerve pain. I feel like I am burning. I hope this has resolved.
Yes, who wants pain? But there is a downside to having a numb jaw in addition to the problems that have been mentioned. You can have a pretty bad dental problem without being aware of it because of a numb jaw. I've had this happen a couple of times. I don't typically get toothaches. In fact I don't recall ever having had one. Instead I might turn up at a dentist's for routine Xrays and be told I have an abscessed tooth that should have been tended to a year before. By the time it gets found, it might be too far gone tobe saved with a root canal. I had a series of root canals on such a tooth, and dutifully got the (pricey!) crown to protect the root-canaled tooth, but a few years later lost the tooth anyway. It would be good if dentists had more awareness of MS and how it affects people.
Years ago I had numbness on one side of my face when I had my daughter in 1993. The doctor said it was bell’s palsy. which went away after about 3 -4 weeks. Then I was diagnosed in 2016 with primary progressive MS. When my new neurologist went over my history. he said back then I probably had my first exacerbation then it went into remission. Good luck . Speak with your neurologist.
Now i have secondary progressive MS. I now experience numbness in legs, arms
Yeah, it was my first MS symptom - well, I think my first might have been my right leg when I was 20 but they sent me to an orthopedic surgeon, not a neurologist, so who knows now - but one of my first MS symptoms of getting diagnosed about 20 years later. For me, they think it's related to my Trigeminal Neuralgia but honestly who knows. I don't think it's all TN-related but it is all on my right side, so who knows. Good luck! Hopefully, your neuro can help to know if you are having a new flare or TN symptoms. I love how often I hear "maybe" from my MS neurologist lol
i get a patch of numbness on the back right side of my head that comes and goes. it's the oddest feeling, but you're right... most people talk about limbs. i do also get numbness in my feet sometimes, but it's not nearly as weird as a patch on my scalp.
I am fortunate that I don’t run the risk of not knowing I’ve injured myself as those with numb feet and hands do.
Sorry to hear you are dealing with this. My relapse which got me diagnosed was facial numbness cheek lip and tongue. Definitely ask your Dr they gave me iv infusion 3 days and steroid pack for home afterwards. Fortunately it did go away after the steroids. I hope you feel better soon
Thank you.
Sorry to hear you experienced this
This was my first & only sign
The facial numbness last for a month and it someone shows up when I have hot bath or if I have fever
Hope you are doing fine now
Thank you. It has improved, thank God!
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