It may or may not be TN. I have SFN symptoms in my left eye, jaw, ear and throat. My throat gets sore, I have pain and pressure in my face, my eyes hurts, and I have a vestibular disorder.

When I was not on very much medication, I had a line of hot, wet and warm sensations that traveled up the left side of my face.

Canagirl,
Sorry, I didn't mean to alarm you. This is NOT TN, that is an entirely different, horrendously intense but sporadic pain. You CAN get Neuropathic Facial Pain/Paresthesia which is very painful and long-lasting/permanent.

My Lidocaine Infusions help me, along with anti-convulsants. But don't stress yourself into a new problem, just be aware.

Dave.

Hi all
Just a personal observation about TN - like PN it can vary with individuals. Mine came on suddenly like a severe toothache but was later confirmed as TN. (I nearly had an unnecessary root canal or extraction but thanks to Bryanna on the dental forum I avoided that). My TN now is the least of my problems - it's still there but has moderated to being bearable. A lot of this I put down to the maintenance dose of steroids I'm on for autoimmune condition - that plus the massive dose of steroids I had while in hospital 6 mths ago which temporarily kicked it into touch. So TN does respond temporarily to steroids however you probably only want to go on steroids if you have no other options.

As madisongirl says it could be facial PN and given your other symptoms this would seem most likely.
Keep going canagirl - the 'war' may be long but you can win this battle.

I have an appt on april 30th, it took me 2 months to find out it was an eye doctor, but thats not the problem.
On feb 3rd, when i went to the pcp welfare, to complain about sudden onset neuropathy(loss of sensation, vibrations, soft touch) and loss of smell. I did initially complain about some eye issue, more like visual snow, or the particulates in my eye fluids is now more pronounced.
Anyways, that whole appt was a bust, as she basically kept pointing my problems to stress,depression, anxiety,or hypochondria, and genetic problem which she had no basis. So i thought when she finally gave me a specilist to see, it took me to find out it was only an eye doctor, and not a neurologist, or a rheumatologist. The reason why i believe she referred an eye doctor, is because she doesnt really believe i have "neuropathy" because i kept saying symptoms kept coming and going, i probably shoulded saying my pins and needles goes away slightly, but not entirely. All these symptoms i can feel right now.
I dont know how much you have loss of smell, but my smell is so diminished, i can only smell fragent, and strong odors, but i cannot pinpoint the source like i used to, i can smell pungent orders, but it was very difficult to discern the smell from other smells. My right nostril seems to be unable to sense any smell at all. This all happened at the same time my neuropathy started.

I felt like it was like a transient stroke, or some kind of very fast onset like "guillan barre"
Even all these symptoms, she only referred me to an eye doctor, knowing that i wounldnt get an answer, so she is banking on the idea, i go back to her and based on her opinions, that i have mental issues. It seems like an easy way to escape from a complex case. I can sympathesize why some people jump to hard to diagnosis disease like ms,als,lyme,,,etc.

My other neuropathy problems, are fasiculations(twitching), myclonic jerks, with some random joint pains

What kind of genetic problem?

I've learned to play it cool at the doctor's office and not come in acting anxious and being too chatty about "what I've studied and read" I simply drop the symptoms on them and let them go to work. If doctors get a whiff of anxiety that's the "hoof beats" they will gravitate towards.


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