Sorry to hear you have this diagnosis.Which doctor diagnosed you with this? A neurologist or the plastic surgeon or another type? It takes a lot of ruling things out to get to that dx, so I am just curious. How long have you been diagnosed with this condition? I have not heard of those symptoms as part of TN or ATN, although you say facial 'pain', not neuralgia specifically, more general.
It's good you have eliminated the dental possibility, as many people go through unnecessary procedures thinking it is their teeth.
Also, are you on medications for this? There are side effects to some, perhaps that could be something to check into. Check with your current physician and/or pharmacy.
If you have not seen a neurologist yet, please consider doing so. If you need help finding one in your area or more information you can also refer to the Facial Pain Association at www.fpa-support.org
My gums swell up as well. I was wondering if anyone elses did too. I have been suffering from TN for about 8 years now. I take Tegretol and it helps alot. But there are times when nothing helps. Good luck to you
I haven't had a confirmed diagnosis yet but my doctor and dentist both think I am suffering from some form of atypical facial pain. I have had all my teeth cleared. I've had an MRI, bone scan, cat scan, EMG, blood tests and a panoramic x-ray. Now I'm waiting to see a head/neck specialist. I too have swollen gums and cheek mostly right sided, numbness, earache, headaches, facial weakness, sharp shooting pains occasionally (Bell's Palsy was a negative) and have had all these symptoms for over a year now.
Yes I'm finding that out....my doctor tried to set me up with an ENT but they sent the referral back saying that I should see a dentist whom I've been seeing for the past six months (a little lack of communication?).....so without even looking at me and clearing my ear, they said to send me to a head/neck specialist. I can't seem to get anywhere lately. It appears from reading different posts that a facial pain clinic is the route to go? I'm waiting to see if the head/neck specialist can figure it out and if he can't my last resource is a facial pain specialist in Toronto which I'm trying to leave for last because it costs me $300 a visit as this is considered dental and I have no coverage. I have seen her once and she put me on a Prednisolone rinse for mild lichen planus. She also was the one that ordered the cat scan, bone scan and blood work but this had to be set up through my doctor because she is a glorified dentist and can't order the tests herself. I ended up getting the results from my family doctor because i couldn't afford to go back to her and the tests all came back normal. Maybe I will have to bite the bullet and go back to her. I was already under the care of a neurologist when they were testing me for bells palsy and he didn't investigate any further after the MRI came back normal. This is sooooo frustrating just trying to get diagnosed!!
Actually a facial pain specialist was my doctor #6 who helped me. He is a dentist with additional medical training. He practices at a large teaching hospital so he has a team that includes a neurosurgeon and other doctors that he consults with.
But like you, I have to pay him out of pocket because the insurance doesn't recognize a dentist in a medical situation.
Unfortunately diagnosis is done by ruling out everything else. Which means tests and lots of different doctors.
This is the second time suffering TN having gone into remission previously. On this occasion however the pain, although in exactly the same place and causing toothache in the same tooth, has caused the outer part of my gum associated with that tooth to swell outwards. This didn't happen last time. The gum is not inflamed at all, just sticking out.
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