Have any of you had something "ruled out"...anything from tooth, vitamin def, ms, cancer, etc...with doctor visits and tests only to find out later that it was one of those things? If so, what...if you don't mind sharing.
I have extreme cancerphobia...esp with the burning tongue...the internet does not help this, nor are the doctors or tests. Wish I could move on from the fear...I could if the pain would go. I was never like this before. Now even I question how much is real even though my doctor assures me it's not all in my head (kinda backwards, huh ;-)
I am dealing with this right now. The tongue pain is like nothing I have ever felt. I have cancer phobia as well and stay clear from looking up symptoms on the internet. I can totally relate with how you are feeling. It gives me a lot of anxiety and it is so difficult to accept that the nagging, unrelentless pain on the side of my tongue is invisible!
I was just at the ER last night mainly so they could examine my mouth. It feels like the side of my tongue is full of bumps or sores. Of course, they saw nothing and just reaffirmed that it is nerves.
The anxiety is so unhealthy and I know that it is probably exasperating my pain and wellness at this point. But how can I not think about it constantly???
The thread I started on tongue pain has 42 replies so far so I guess it is a fairly common part of TN.
I see stuff on my tongue that apparently they don't see. They say it is "normal anatomy". I talked the doc into a lidocaine gel for the tongue...which helped, but I swear now I have a small white painless sore or something where I was applying it. I called pharmacist and he said overuse could cause chemical burn...hoping that's all it is, but I am freaking out and can't stop obsessing. Doc said if not gone come in after two weeks (one more week)...but I'm obsessing and trying to get some kind of reassurance. It's like I just know the day is coming...even though other than nerve pain, the multiple doctors, scans and blood work say I'm healthy. Don't get me wrong, I am thankful not to have a worse diagnosis, but fearful that they are missing something.
I wish I could reassure you but I do not know either. I do completely identify with how you feel though. My stress always comes out as anxiety and fear is the biggest part of it. For me night time is the worst after I go to bed. I think because I have nothing else to focus on but my own body. These past couple of weeks I have gone from having an annoying sensation on the side of my tongue to having full blown Atypical symptoms on my tongue, roof of my mouth, teeth and under my lip. And this is all taking place on the opposite side of my face from where I have had ATN up until now. No wonder I am anxious and afraid. I suddenly have Bilateral TN!
TN really exasperates this by its very nature as far as I am concerned. It is invisible first of all. Second of all it is difficult to find any "answers" because it is mostly progressive and treated according to what your symptoms are. There are no definitive tests that says 100% for sure this is what you have. It is frightening.
It sounds like you are taking all of the right steps and are being very proactive. Rest, learn, read, research and keep at it until you feel that your concerns have all been addressed.