Numb Chin Syndrome
Posted , 56 users are following.
So I have a small spot on the tip of my chin that is numb, like feeling like how it would feel if a dentist gave you anesthesia. Just numb. I thought maybe a shaved to close and cut it making it numb. Then after taking it for maybe a month or so, I decided to see what could be done about it. I instead found out about Numb Chin Syndrome. Everything I read is this is fatal within months due to cancer. Although I have read it can also be cause by diabetes neuropathy (I'm a type 1 diabetic for about 35 years now, so I'm praying to god that's what causing it, although I don't really have much other neuropathy in my body, so that kinda seems like a stretch), and I've also read anxiety can cause it (And of course I've had anxiety most of my life). Anyways, to the point, suddenly I'm starting to get TMJ symptoms, earaches when sleeping, dull headaches that last a few seconds and then go away... Should I go to the doctor and see about getting an MRI scan, knowing if it comes back positive for cancer of any kind, I'm probably going to die soon and have most of my remaining time spent in a hospital instead of out in the world living, as well as leaving behind my wife (who does think this all in my head) and 10 & 8 year old kids, which the thought of is pushing me towards depression. I'm at a complete loss for what to do here and scared and feel so lonely. Thank you in advance for anyone who has any advice...
2 likes, 260 replies
ka76550 nate73255
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Hi guys new here. Not sure I'm even posting correctly. So I had like a pins and needles feeling in my chin right side for a week and eventually did the worst imaginable and googled it. Oh course I am in complete melt down. My doctor is giving me blood tests for but deficiency etc and doesn't seem too concerned. Mine comes and goes throughout the day. My worry is I've had visual disturbances for a year put down to migraines after having high blood pressure during and after pregnancy. I want to thank everyone for their reassurance on this thread. I'm still Convinced something is wrong. I'm 28 with a 2 year old and I just cry when I look at her. Ms is in my family, strangly I would rather that diagnosis than all the other things I have read online. I hope you are all well and that we survive this not so funny chin! Mine has also moved a couple of times and it has made me hopeful haha what is going on??? I'm currently shaking with fear but if I don't laugh I will certainly cry again!!
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mandy1983 ka76550
Posted
Hi ka! I'm so sorry you find yourself here, but glad you found us so you don't feel so alone. Mine has moved around too, and like you, every time it does I get excited. Haha! The last few days it's been on both sides of my bottom lip and even a few times on the top. But the majority of the time it's the right side. I've also had random pains in the front of my chin that I'm sure is related and that scares me even more.
I'm praying for you! Hang in there!
ka76550 mandy1983
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I feel like when I take one of the short term anxiety meds I've been prescribed it almost disappears (they're benzos so I'm only allowed a weeks worth) but not completely and I cannot put this down to anxiety with the other neurological symptom of visual disturbances. There isn't much they can do in the UK in terms of mri etc due to the pandemic. My doctor said of course they cannot rule out Ms or anything sinister but she doesn't feel it is she just feels its a little strange. Awesome to hear from your doctor haha. Praying for you also and everyone else here! I can tell we have all been to hell and back due to the devil of Google!!
fiona71381 ka76550
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Hi Ka, sorry to hear you're going through this aswell. I'm generally laid back and have tried to focus on the lesser things this could be, but today I told my mum and burst into tears. I've had my numb chin for 5 weeks now. First Dr I spoke to wasn't concerned either and told me to phone back in 3 weeks if I still had it. So I phoned back a couple of days ago and spoke to a different Dr. After asking me about the numbness, where it is, how much of my chin is affected and if it comes and goes or constant etc she started asking me questions related to cancer symptoms and invited me down for a blood test.
I asked the nurse what I was being tested for and she said everything. Kidneys, Liver, Spleen??, full blood count, platelets, bone profile, inflammatory profile, b12 deficiency, diabetes, thyroid and a few others I cant remember the name of. I get my results either tomorrow or friday and I'm now terrified it's bad news!
I also have visual disturbances since giving birth last year and have high BP. I mentioned it to the Dr but everything is so difficult with no face to face appointments. Goodluck with your test results.
I feel for all of you who have been dealing with this nightmare for ages, especially when it goes away and comes back again!
mandy1983 fiona71381
Posted
I'm praying for you too! I'm so sorry that you're going through this, but it's really good that they're taking you serious. My doctor's probably all think I'm nuts. Does your chin stay numb or come and go? Mine comes and goes but it doesn't stay gone long. The longest I've went without it has been about three weeks. After going through this a whole year and a half, I'm still terrified every time it happens.
kristen69526 mandy1983
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Hi everyone! To the new people, welcome, but I'm so sorry you have a reason to be here!
On Friday, I hit 2 years with this darn chin thing! Mandy, yours and mine sound so similar - moving (yay!), random pains (boo), and disappearing for short times.
Just last week I started a Lexapro for my anxiety. The pandemic plus my husband being deployed and feeling like I couldn't see a doc if I needed one and this sudden homeschool business were just too much for me. I know I shouldn't be able to tell a difference but I swear I feel less on edge already, and my chin feeling disappeared again today!
Everyone is in my prayers for health and for peace of mind!
ka76550 fiona71381
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It is sooooo strange that we both see visuals and now this, I searched the Internet for someone in the same boat after the visuals and only this chin has brought us together! When I told my mum she laughed, it does sound ridiculous to be fair as it seems quite trivial until you Google it. So I feel I have support here. I do have bad health anxiety so my family don't take me very seriously anymore.
I asked my doctor was she testing me for inflammation and she said "well, no..." I don't understand why, maybe when I go on Tuesday I can push for more than a vitamin test. They always come back fine although once the white blood cells were low but they returned to normal.
Please let me know how your blood tests go and if they're fine what the next steps are.
I'm crossing all the fingers and toes and praying for you.
ka76550 kristen69526
Posted
Oh wow 2 years that gives me hope!!
mandy1983 kristen69526
Posted
Aww Kristen! I'm so sorry that you're going through all you are. I can sympathize with you over the homeschooling thing. I wasn't cut out to be a teacher and mine is only in kindergarten. Lol!
Yes, I always get so excited when mine moves around but it never leaves that one certain spot, just starts happening in others. It's so weird. The chin pain terrifies me but everything I've read on NCS is that there's hardly ever any pain. I've just recently started getting a pain under my chin on the right side also. But it's only happened two or three times. Do you ever get twitching in your lip? Mine has done that a few times lately too. And if i put pressure on my chin it trembles. It's all so weird. I hate it! Anyone else experience any of this with their chins?
I'm on wellbutrin for my anxiety and just started a higher dose on Monday. I'm praying that does the trick because I'm exhausted having to worry about this all the time. Even when it's gone I still have it in the back of my mind.
mandy1983 ka76550
Posted
I have health anxiety too and am in the same boat when it comes to your family not taking you serious. Any time I mention the chin they get this look on their face like, here we go again. It's frustrating to say the least. But I get it because if I weren't going through it, then I may think the same thing they do.
Mine has been going on for a year and a half. That gives me some comfort, but I just want an answer.
I will say, I was deficient in Vitamin D and anemic, and after taking a multi with iron and Vitamin D once a week it did get a little better for a few weeks, but then it came back so I'm not sure that was the cause for it to be gone for a while.
I hope you get some answers because I don't think any of us have so far. Praying for you all!
fiona71381 ka76550
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Hi Mandy, my numbness has been constant and in the same place. It covers the whole right side of my chin from my bottom lip, right down under to the top of my neck. My gums on that side are numb too, I couldn't help myself but check!! Does it mean something different if it is constant? Has yours always came and went? Or did you go through a period of it being constant too, especially in the beginning? I'm just wondering if mine will eventually start to come and go too.
Hi Ka, Did you suffer pre-eclampsia or other bp related issues during you pregnancy? I had 2 pregnancies back to back, both times hospitalised and induced early for uncontrollable high bp and pre-eclampsia. The flashes in my vision started at the end of my 1st pregnancy and carried on and off since. Eye hospital said it was just the jelly separating and tugging the retina and nothing to worry about. I also started having seizures at night. I only know I was having seizures because I was biting my tongue!! Not pleasant hahaha
You should definitely push for more tests, I was told the inflammation test was a really good one as it can highlight a wide range of issues.
I had a missed call from my GP this morning, talk about panic!! GP's never phone for good news!!! Turns out my test results were ok, but they wanted to repeat my fasting bloods (for diabetes) as the readings were high. I appologised and admitted I was drinking diet coke until 3am (up studying) and didn't realise it affected the results. So that is very good news! No idea what happens next, nhs aren't doing any ct or mri scans just now.
I hope your results are ok too!
ka76550 fiona71381
Edited
My bp issues were quite strange, the usual creeping up towards labour then in labour getting quite high and being rushed for a c section. However once baby was born it took almost a year for my blood pressure to normalise. My visuals started and when I checked my bp it was the highest its been at 160/116 so they were put down to that. However they are still on going. I have always been terribly worried about them however I think this chin thing is frightening me more. As I've only had it a week or so I'm hoping it disappears and will be a distant memory but judging by this forum I don't think that's the case.
I will be pushing for further blood tests, my doctor said she will come in and do a basic neurological test on me on Tuesday after the bloods, I'm sure that will only consist of shinning a light in my eye. Have been to all the specialist eye doctors who say my eyes are perfect.
Having health anxiety is a curse, just when you think things can't get any worse they do. Thank god your bloods are all okay, I have heard this can be caused by diabetes, obviously we wouldn't want that either. If we weren't on lockdown I wouldn't honestly spend my savings on a family holiday for 2 weeks and live my best life aha
ka76550
Posted
Would*
mandy1983 fiona71381
Posted
That is wonderful news about your labs coming back good! Now that you mention it, I do have some visual stuff but it is mainly floater type things. It's happened so much the past few years that I just forgot all about it. I'm on a medication for my lupus and rheumatoid arthritis that is known to cause vision loss, it's rare but I have to go to the eye doctor every couple of years to make sure I don't have any vision changes. It got so bad at one point that I quit taking it. But my rheumatologist was adamant that's not what caused it and encouraged me to stay on it.
As far as the numbness and tingling, the tingling comes and goes. I feel like there is a slight numbness in my right side but I'm not sure if it really is or if it's just my anxiety talking.
Also, I didn't have pre-eclampsia with my two babies, but with my first one, the day before I had her I just had a routine midwife visit and because my blood pressure was high they admitted me and induced me. I was induced with both of my girls.
ashleeboof mandy1983
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I hate that we all have googled this dumb symptom and NCS has caused us so much anxiety. When I first posted a couple of weeks ago, I had spiraled into the darkest place. What helped was that the tingling seemed to move, and then I knew logically that it couldn't be cancer. My background is in radiation therapy (treating cancer patients), and I am trying to cement my experience and schooling into my brain and know that cancer doesn't come and its symptoms don't move. Also, logically, if this symptom was cancer, I believe we would be having other major symptoms. We have to remember it is RARE for this to be an initial symptom, and that if it is already affecting our nerves in our faces, we would most likely also be experiencing other symptoms. I am saying all of this as a pep talk to myself, and you all too, because I am still struggling with not letting anxiety win. My symptoms weren't around last week, but this week they are back and on the opposite side of my chin. It is HARD to not go to the darkest place, and of course, the more you think about it I swear it makes it worse. I know that if I am busy doing something I will catch myself and notice I don't feel it, but as soon as I let my brain go there, it comes back. I just want it to go away completely. I did have lab work done, and it all came back normal, so I should feel better. I'm just trying to figure out how to deal with this anxiety in hopes that once I do, this will all go away. I am thinking of all of you and am thankful for this group only because I know we aren't alone. I wish we weren't going through this, but are thankful we are in this together.
mandy1983 ashleeboof
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Ugh! Today has been awful. Actually last night into today has been awful. It started last night when I kept having that stupid random tingling underneath my right bottom lip. It came and went until I finally went to bed because I couldn't take it anymore. So this morning, I woke up and went about my day, and didn't feel it for the first hour, but then while I'm just sitting and taking a break from laundry, my lip starts having just a weird feeling. Almost like you're just more aware of it being there. So I immediately get anxious, and then comes the tingling. Like you kind of have to concentrate to know if it's really there or not. So I thought I would put some lip gloss on just in case it's just feeling different because maybe it's dry (Grasping at straws here). It's definitely a slight tingle that is pretty much constant, just worse at some times than others. I can kinda feel it in my left lower lip but I'm not even sure at this point. I do have a lower tooth on the same side that the gum feels puffy around, but I don't know that it could be causing this. I'm just about to have a total melt-down. I'm so sick of this stuff. I would love to be a normal person who just worries about what I'm gonna eat for lunch, or what I'm going to wear. You know, silly, every day stuff . Instead, I'm here worrying that I'm eaten up with cancer because of this stupid lip and chin stuff!
nate73255 mandy1983
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Sorry to hear your having a bad day Mandy. Can I offer a piece of advice for when I have bad days? Try to find something to do physically and see if that makes it go away. I play my oldest son in basketball alot when my chin starts its tingling. It works for me most of the time because I stop thinking about it completely. It may or may not work for you, but it may be worth a try. Anyways, I hope you get rid of that awful feeling!
mandy1983 nate73255
Edited
Thank you, Nate! Today has been so much better! we had drive-in service at church and then went for a drive and for ice cream. It took my mind off of everything for a little bit and it was such a relief. I also haven't hardly felt anything today as far as the lip and chin goes.
It was really weird last night. As I put my girls to bed, I started having tingling under the left side of my lip, and it usually happens on the right. It lasted for an hour before I finally fell asleep.
I woke up this morning and thank the Lord it was gone! It's all so weird. Once covid is over I'm gonna ask for a referral to a neurologist.
ka76550 mandy1983
Edited
Hey i don't have much to add except I had a full day yesterday without it.. With a hangover which I thought would obviously make it worse due to anxiety! I also don't feel it for the first hour of the day, it's like I've forgotten about it for a while then when I remember I become hyper aware of my chin. My bloods are tomorrow but my child has developed a slight cough ill need to find out if I can still come in as she did say if anyone had any covid like symptoms to please stay at home! Children cough randomly though and it isn't consistent. Ahh.
I have been taking vit b with niacin, I am not sure if it's placebo but it has been reducing significantly since. I've also been massaging the area in hope of it being a trapped nerve.
mandy1983 ka76550
Posted
I'm ordering some Vitamin B complex. Do you think that would do the same thing?
fiona71381 mandy1983
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Hi, sorry I've been quiet, I've been reading all your posts but with 2 small babies I've struggled with time to reply.
I have read a few where you say your numb chin comes and goes. Is that a good thing? My numb chin has stayed constant for over 6 weeks, covers all my right side of my chin from my top lip to under my chin down to the top of my neck. Did you all have it constant before it started coming and going?
I swear my boobs are sore from checking them!! I don't even know what normal is meant to feel like haha all I feel is lumps. There are 2 lumps which feel more sticky-out than the others and a little harder but I have no idea what I am meant to be looking for!
I had my 2nd diabetes fasting blood test done yesterday. My cousin works for the practice so it was her who took my blood. She also has a son with type 1 diabetes and I asked her if diabetes causes a numb chin and she says she has never came across it.
So now I'm worried again.
Is there a cancer that can't be detected by bloods?
I still have minor changes detected from smear tests since 2015 which haven't been checked for 2 years because of my 2 pregnancies. Could it be this?
This is starting to worry me now because no one is getting referred for scans. Is there other less serious things this can be?
I'm wishing you all well x
mandy1983 fiona71381
Posted
Hi Fiona! Yes, contrary to what you find on Google, there are other things this can be besides cancer. It could be from a cavity or a crack in your tooth, from lupus or some other mixed connective tissue disease, MS, fibromyalgia, or diabetes, to name some of them.
I know all too well how worrisome this all is, but me, Kristen, and Nate have all had this for a while. I think they're both about to hit the 2 year mark if they already haven't, and I'm at a year and a half. I still worry almost every day about it. But the fact that your doctors are taking you seriously is great!
Please let us know what you find out. I'm praying for you!
mandy1983 ashleeboof
Posted
Hi Ashlee! I'm so glad your labs came back good. Also, that's good that your feeling is switching sides. Mine does that too but is still mostly on the right side. I sit and pray for it to move at times because every time it happens on my right side, I freak myself out. Mine isn't constant but some days it happens more often than not. It's so aggravating. I hate it for all of us.
I'm praying you're feeling better!
Ang476 fiona71381
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Hey Fiona!!
Mine is like yours and has been constant it does not come and go and I have had it for the last 9 months! I have had so so many tests done from blood work to tumor marker tests to MRI's, mammograms and CT scans (I even convinced my doc to give me an MRI of my breasts after the mammogram came back clear). Everything has come back perfect but I am still a complete nervous wreck that some type of cancer that is causing this. Right now my fear is oral cancer : ( This whole situation has lead me down a really dark road. I have cried, felt major panic and even made tapes for my children so they wont forget me. Its been really really rough. the only solice I have is that it has not gotten worse and I don't have any other alarming symptoms which I think I would have had by now.
I have learned that google is a really bad place and I do my best to stay away. I just want you to know you are not alone and I am here if you ever need to talk.
Ang
fiona71381 mandy1983
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Hi Mandy and Ang, thanks for replying, sorry it took so long for an update.
On Friday my diabetes test came back negative, but I suspected that anyway. I still have the tingling numbness all over my right chin and lip, nothing has changed there unfortunately.
On Friday night I was having episodes where my right hand suddenly felt freezing cold and would go numb. it happened again on Saturday and on Sunday it happened to my whole right hand and arm up to my shoulder for the whole night.
So I phoned my GP this morning and they are referring me to the neurologist and want me to go for a face to face appointment so she can examine me properly. Hopefully this leads to all the necessary scans. It was the same DR who took it seriously last time which is great!!
I also phoned my dentist who was really concerned and felt I needed an urgent X-ray so she phoned the dental hospital to ask for advice since contact with patients is not allowed.
Hospital phoned me back, and said the senior dental surgeon wanted to see me straight away for an examination and full X-ray so went straight up.
They gave me the all clear, it isn't anything dental that's causing it. They suspect neurological. So at least I can let the Dr know when I go for my appointment tomorrow morning. My fingers are crossed they get to the bottom of this. I hope you are all well, it's great to hear some of the dreaded numbness has been going away.
Ang476 fiona71381
Posted
Hey Fiona!!
Just checking in on you. How did you appointment go?
fiona71381 Ang476
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Hi Ang, thanks for thinking of me. All day Monday my right hand and arm continued to have intermittent numbness, then in the evening my right foot and leg went numb too. It only happened once for about 10 minutes.
Then I woke the next morning and the right side of my chin was even more numb than before which was quite scary.
The Dr was great. I told her about everything plus the all clear from anything dental. She examined my motor function, I'm assuming for signs of a trapped nerve somewhere. Then we went over other symptoms I have experienced lately besides the numbness, we discussed the new seizures I believe I had been having at night, the little headaches I seem to have all the time etc. She also went over my blood tests and explained that although it's good everything came back negative, it doesn't really rule anything out because they are only surface tests, like possible indicators, and that more in-depth tests need to be done to actually rule anything out (I asked if my negative blood tests rule out all the cancer possibilities).
She said it appears to be a problem with my central nervous system and she made an urgent referral to neurology where she explained they will want to do more testing and scans (brilliant!!)
She advised I keep my phone close, charged and volume up because they will phone me shortly....... that was Tuesday, we are nearly into Friday. Got to love the NHS hahaha!
I was apprehensive with it all before, but I feel quite scared now. She said the neurologists will want to test me for the 'bad stuff'. The numbness in my right arm and leg is happening more often now, I'm assuming that isn't good??
Thats everything that has happened over the last few days. I really hope I get that phone call tomorrow, the wait is awful.
How are you? Is your numbness still the same? Have you spoken to your dentist about your fears? Mine was great, she seemed to appreciate immediately how concerning the numb chin symptom can be and pushed for a full oral examination to rule all dental causes out.
fiona71381
Posted
Does anyone know if the numbness spreading to the whole chin is good or bad? I can't find any information about it online.
I phoned my GP yesterday to let them know I had been feeling dizzy and the numbness to my right arm and leg was almost constant now. This was before the numbness spread to the left side. Unfortunately I spoke to a different Dr who said I have been referred to neurology and should just keep a symptom diary for them. So I really don't want to phone them again.
Ang476 fiona71381
Edited
Hi Finona!
I did go my my dentist in the beginning who did a full x-ray and didn't find anything which is awesome. It just scares me that I have no explanation for this weird sensation and I have had so many tests. From everything I have read there has to be a reason. (I wish I never read anything)
I don't have any experience with the numbness spreading. Mine is always on the right side. I don't even know if i am using the right word when I say numb. I have complete feeling (pin prick, hot and cold etc) it just feels different then the left side. It is so weird and stressful!!!!!!!
Did you get to go for any scans yet or see the neurologist? I hope you get some answers soon waiting is the worst!
If you need to talk i'm here!
Wishing you the best,
Ang
mandy1983 Ang476
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Hi guys! I too had a couple of dental exams, one of them being at an oral surgeon's office. He said there was nothing that would explain the numbness. The tingling for me comes and goes. I'm not sure if that's a good or bad thing. For a few days I didn't have any tingling episodes and I had the best days not thinking about it. I still haven't had it too much in the last couple of days but I have what feels like burning/tingling in my gum on and off. I do have what looks to be a crack in one of my back teeth and also a puffy gum around that same tooth. I had pain in the right ear yesterday and today too. I'm not really sure if that could be causing it or not but I don't think it's just coincidence. Maybe it's wishful thinking? I don't know, but I do know that I hate it for anyone going through this. I wish I could turn back time and never went to google this stupid chin and lip!