Trigeminal Neuralgia Community
Trigeminal Neuralgia?
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Trigeminal Neuralgia?

I am a 27 yo female. I was born with a cleft lip and palate and had extensive facial surgery. After my last surgery at 24 I suffered from very bad facial pain and was subsequently diagnosed with aytipical trigeminal neuralgia, and TMJ. After about a year of medicinal treatment I gave up my pain was going away anyhow so I stopped going to pain management and stopped seeing my neurologist. Over the last two years I have had minor flare ups and for awhile no pain... Until a couple of weeks ago.
Not only has this pain been more severe than ever even sending me to the ER formthe first time, but I also have other symptoms that I have had before exacerbated, and new symptoms that I have not had before. Symptoms include joint pain, numbing of hands and arms at the slightest touch, stabbing pain in my back, super painful contraction of my belly sort of into my ribs, facial twitching, and occasionally my knee just buckles out from under me.
My pcp says this may all be related to eachother but he is not sure since this is beyond his field of expertise and getting a neurologist has been super difficult.
I have 9 different MRI's which all came back normal, over time some diseases have been ruled out rheumatoid arthiritis, and lupus. Others have been diagnosed hypoglycemia, and severe b-12 deficiency that accounts for my fatigue.
As far as drugs that I am currently tentegretol has helped immensly for the pain, 100mg twice a day, zoloft 50mg once a day.
Can TN amd TMJ really have all these neuro symptoms.
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I'm not aware of TN causing other neuro symptoms, but I'm not a doctor, I'm just a fellow TN sufferer.

Anecdotally, I chat with people that have health issues in addition to TN -- and auto-immune diseases like MS and RA are mentioned. I personally have MS and TN.

However if your TN was caused by damage of the nerve during  surgery, these other symptoms could be something else just piling on.

If I were you I'd keep searching for a diagnosis for these other symptoms. Sometimes it takes seeing a variety of doctors to figure something out.

Have you posted on the neurology community?  Perhaps someone there could help.

Take care and let us know what you find out. Your story may help someone else.




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