Numb Chin Syndrome

good to hear from again Mandy, and very glad things are going good as can be for you with your health! So yes please pop in here from time to time!!! Its always good to hear from you. 😃

Hi everyone!

I too am suffering with numb chin/bottom lip and I am absolutely TERRIFIED!!!! it all started with a weird burning on my tongue and then kinda moved to my lip/chin and teeth. i am going in 10 weeks of this and i have been a total emotional mess. I cry all day over the thought of leaving my children motherless. i have been to my GP and had tons of blood work taken and everything came back normal, i had a chest CT, Mammogram/ultra sound, a mri of my brain and one of my cranial nerves, i also has a x-ray of my mandable and a CT with contrast of my mandable/ mental forman ALL came back normal but I just cant shake the feeling that they are missing something. this has completely taken over my life. I did have the tooth in front of my wisdom tooth pulled out in march but the numbness didn't start until august so it cant be that. rrading everyones stories had helped but i am just so so scared.

Ang, I wish I could come give you a big hug because I remember how awful and inescapable that fear felt.

It sounds like you have a supportive doc, so that's great that you were able to get such thorough testing, and all with good results!

It took time and therapy for me to crawl out of that fearful hole. I hope you can get there too. We're here for you!

Hi Ang,

First of all, welcome to the group. Believe me when i say, we have all been where you are right now. Now the good news... Your doctors are medical professionals, they have done the test, and have come back clean. Now i'm going to hit you with a big piece of advice that i wish someone would have told me back at the beginning of my journey... Don't trust Dr. Google. At all.

Now, what i would ask you to do is spend time with your family and try as hard as you can to get over your depression. I know easier than done, but depression is brutal on your health.

Hey, one last thing. You got this. Our group is proof that what you are feeling is not a death sentence! Live life! 😃

I'll pray for you in the meantime. Keep in touch.

Thank you Kristen and Nate!!

This is by far the most terrifying experience of my life. I really feel like my time left is so limited I can hardly function. whenever I go back to look online to prove to myself i am ok i just dig my hole a little deeper. I also have been to my endocrin and Ent both who have never even heard of NCS. my ENT put me on a steroid but it is not helping. in all your searches have you found that with NCS there is always a tumor or that it can always be found on a CT? i am just so scared they are missing something. I really feel like a crazy lady. any prayers advice or guidance are SO greatly appreciated!!

@Ang476 I am praying for you. I too know the feelings you're having and for me it was debilitating. Still is for me some days. The other day I ended up in the ER due to a pain under my rib that I had convinced myself was liver cancer. That whole day my lip had that tingly feeling on and off, so it just added to my fear. They did a CT of my abdomen and bloodwork to test my liver function which all came back normal, but the CT was without contrast so then I had myself convinced that because they did it without contrast that it missed something. I hate how I always feel, like you, that my days are limited. And always feeling like the doctors are missing something. It's not living. I'm not enjoying my kids like I should because I constantly worry that I'm gonna leave them behind and it's more than I can bear to think about. I will definitely be keeping you in my prayers. Please pray for me too.

Oh @Mandy1983 this is the worst thing i have ever been through.. it is so debilitating. The thought of leaving my kids is just unbearable. The thought of it paralyses me with fear. Any little lump, bump, or twinge of pain I feel is automatically cancer in my mind all because of this weird feeling on the right side of my mouth. it has totally taken over my life... I hate second guessing everything and feeling like every doctor is missing something. Thank you for your response. it helps so much to hear from someone else going through this also. I am praying for you... i pray that we can both find some peace and healing!

Hey Ang! Just checking in with you. I have been having the weird crawling feeling in the corner of my mouth and bottom lip, like one little tingly spot, since Sunday but it's only when I bite my lip. (I have this habit of chewing my lip, and I'm pretty sure it's anxiety related.) The other times it's happened when I would smile and it would come and go.

Do you have the tingling feeling, just the numb spot, or what exactly do you have? I know people have different sensations. Mine is only slightly numb feeling, and I have intermittent tingling feelings in my lower lip closer to the corner of my mouth. I've also recently been experiencing my tongue twitching, (weird, right?!) and last night my lower lip twitched a couple of times only on the right side. This whole thing is just weird. I do have the tingly feeling on other spots of my body at times, like in my left knee, the back of my head, and on my nose, but not as frequently as the lip.

Anyways, I won't ramble anymore. I just wanted to check in with you. Sometimes it helps me to share what I'm feeling to see if someone else has any of the same issues. I'm praying yours has resolved by now.

Hi Mandy!!

I am going on my 11th week with this.. it is an absolute nightmare and I cant get the fear of cancer out of my head. I am just terrified! Mine is on the bottom of my lip to the corner of my mouth as well. I also have a spot on the tip of my tongue that almost feels as if I drank really hot coffee and gave it a little burn. I also feel it in my bottom teeth on that side. Its not really numb because I do have total feeling in all the spots. Its more of a weird tingly/ burning sensation. It has made me crazy. i just want it to go away so bad!

I'm with you on wanting to go away. It's the weirdest thing I've ever experienced and it terrifies me. Mine is only there when I move my mouth a certain way. It hasn't went to my teeth and gums, but at times I feel like my jaw and side of my face is a little numb but it happens more in my lower lip and corner of my mouth than anywhere. I wish mine would move to my whole right side of my face, as weird as that sounds. I wouldn't be so worried then.

Yes lol I know exactly what you mean! at least if it moves to the whole side of the face I wouldn't have to worry about NCS anymore lol. Mine is weird cause sometimes I feel it really bad and other times I only feel it if I move or touch my lip/mouth. The bottom of my lip is the most effected. I almost feel like when I touch that one spot it effects all the others. I cant really explain it. Sometime I feel like my jaw and side of face is numb too. It is so weird and nerve wrecking (pun intended lol).

I took my two girls to get their Halloween costumes today and I cried when we left the store because I am so scared I wont be here to celebrate with them next year. This is just all too scary for me.

Ill keep sending up those prayers for you. hopefully they will get answered soon.

Aww! Thank you for the prayers! I need them! I really feel so terrible for you because I know the fear of not knowing if you’ll be around for your kids or not. I’m afraid every holiday will be my last all because of this stupid chin and lip thing! I’ve prayed for you and will continue to. I’m sure you’re fine because you’ve had all of the tests and they’ve all come back good. If it were something sinister you would know it, so take comfort in that. I have terrible health anxiety so I know that’s easier said than done. Do you have a family doctor that could possibly prescribe you a mild anxiety medication? My family doctor prescribed me Wellbutrin, the lowest dose, and I can tell a difference. I used to cry every day and couldn’t even function. I still worry but nothing like I used to. You’re gonna get through this.

Just some things that have helped me deal with this whole thing, like I stated above, I take Wellbutrin, and I went to a christian therapist for a while. I also do devotions that are focused on worry and anxiety and they’ve really helped me at times when I didn’t think I had any hope. You can look them up on Pinterest. There’s some really good ones. Again, I’m praying for you. Just know that you’re not alone. We’re here for you. You can always message me if you need to.

Oh Mandy, I'm so sorry for these worries and so much fear!

I do believe that anxiety is probably making your crawly feelings worse. 100%

As for the rest, I think if what they saw seemed urgent, they'd be calling you in right away, holiday or not.

And last, lymphoma infected nodes don't typically hurt right?

I wish I could offer you more help and solace. Big hugs.

Thank you, Kristen! I'm actually friends with one of the radiologists and he said kidney cysts are really common and spleen cysts are pretty common but I don't know if he's just saying that to make me feel a little better or if it's true. I do think anxiety is playing a big part in the crawling feeling bc I've actually had it in other places today, but just more in my lip. I cant believe over a year later we're all still dealing with this. I feel less alone when one of you comments. I know that's probably silly but nobody understands. Thank you for responding. I have calmed down a little bit but still find myself crying randomly which doesn't help things.

I'm so glad to hear you're feel better. Does the Holiday stress you? Even though I love it, it stresses me and then everything starts to seem worse and my anxiety really cranks up.

I feel the same way about this group though. It makes all the difference when I'm spiraling to be reminded I'm not alone, and that we're all still here. Some days, that reminder is the best help for my fear!

I'm not too stressed. The thing stressing me the most is the whole lymphoma worry. I don't understand why this feeling keeps coming back. I've cried for the last two days and I just want my life back to normal. I want to enjoy my girls and not always have some cancer fear in the back of my mind. I'm the lowest I've been since this whole thing started and I can't seem to get myself out of this because it's always something. Every little ache and pain I worry that it's something to do with this.

I'm sorry, I just can't talk to anyone about this so this is my outlet. Thank you so much for sticking around and listening to me.

Sorry i'm just now seeing your post. I see others have replied to you already, so I hope their posts have given you some comfort. I think we all still have days like what you experienced today... I know I sure do, and I'm almost 2 years into this thing. So please realize you are not alone. Anxiety and depression will do weird things to your body, so please try to find some way to take your mind off it. I don't know what your hobbies are, but whatever you enjoy i'd suggest doing it.

Finally trust your doctors and NOT Dr. Google! Remember this, nobody is posting wedsites where someone got a numb chin for no reason, because that website won't get clicks, and the researchers wouldn't have put any information making them look smart. There is almost a motive in what is posted.

Finally, as always, I'll be praying for you. 😃

This forum moderator wont let you post other sources of websites

Thank you, Nate! Prayers are the very thing I need right now. I feel like this numb chin thing is moving from the corner of my mouth and sometimes I even feel like I'm feeling it in my top lip too. Mine is more of a tingly feeling like almost when your hand falls asleep but it isn't constant and weirdly enough I don't feel it if I touch it. It's so weird. I'm trying to stay away from google bc that's what got me into this whole mess in the first place.

Thank you for responding and especially for the prayers.