Trigeminal Neuralgia Community
Undiagnosed, overwhelming
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This patient support community is for discussions relating to trigeminal neuralgia.

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Undiagnosed, overwhelming

I don't even think it's TN due to the symptoms (dull pain, sinuses, swollen glands). Just hope some of you have some experiences to share and how you may have dealt with these types of frustrations getting diagnosed with a "last place to look" condition. I'm uninsured and have blown through my savings and am racking up debt, meanwhile I'm still in pain.

I've been having chronic unilateral pain and sinus issues on the right side of my face for 6 months accompanied by swollen glands under the jaw. I've also noticed that my right eye is droopy. I just had over $4,000 of dental work done in the past 3 weeks and my bite has changed so I'm hoping that it was TMD because of an improper bite. They have said I have acid reflux, so I should not even take NSAIDs since they are so reactive.


Diagnostics so far:
Blood work showed nothing substantial except raised basophils (1.7%, top range is 1.0%) but it is non-specific.
Urinalysis insignificant.
Videostroboscopy, ENT said I had an infection and treated with antibiotics. I was supposed to return for a CT.
Upper Endoscopy insignificant except for acid reflux.

So at this point, I'm supposed to get a CT from an ENT, go to a neurologist (referred by PCP) for TN, and an oral surgeon for TMD if I don't see any improvement.

My money is on TMD but nobody has even mentioned this, despite my previously poor dental health. When I compile all this information and try to present the history to my PCP I look like a hypochondriac. He even told me to see a psych. It is infuriating spending money at U.S. healthcare rates, not getting answers, still dealing with pain, and then assumed it is psychosomatic.

On a happy note, my teeth look wonderful compared to before :)

Thanks for reading.
Avatar_f_tn
Sorry you're dealing with all of this. It doesn't sound like TN so you may want to post your question on some of the other forums also, like the TMJ group, Neurology, etc..  You'll get more responses that way.

I know from my own experience with TN, it took six different doctors before I got diagnosed.  Try not to get too frustrated.  It angers me that they do the psychosomatic stuff. Stick to your facts, describe your symptoms as you did here and find a new doctor if they won't listen to you.

Hopefully the obamacare will help with the lack of insurance.

I wish you all the best in your search.
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