trigeminal neurlagia

[ELT]

  Hello all.  My neuro has never actually said I have trigeminal neuralgia, he's treated my imaginary facial pain with various anti-seizure meds, recently I have used the diabetic med, lyrica, which works.  

  Question I have is, if bilateral trigeminal neuralgia is only common in ms, why can't THAT be a diagnostic aid, much like optic neuritis?  

  Should I have asked him to NAME my facial pain?  To get him to admit something is up with me?

  I'm sorry, I'm ranting, I hurt at the moment.  I'm also frustrated with looking like a lunatic to many people.  The ones who don't REALLY know me.  The ones who say, 'You must be feeling better, you look so good.'

  Thanks to all who answer questions,  I'm quite brain dead at the moment, doing stuff like dispensing liquid soap onto my toothbrush, etc, lol .  So it's nice that other people can think for me.  lol

[ELT]

Hi, angela, quix noted the site on another post.  I found it, it's www.fpa-support.org.  

[jensequitur]

When I went to the doctor with facial numbness, she listed it as trigeminal neuralgia, even though I had no pain at the time.  That's changed, unfortunately!  Now I get little pains all over.  Nothing worth taking drugs for... yet.

ELT, you're not the first person to comment on the weird drugs you were given for the pain.  What I hear is that the pain is neurological, therefore the drugs need to change brain chemistry to be effective.

[ELT]

Thanks, just took the test.  As I answered, no, to the ms question, it gave me a diagnosis of TN1.  Thanks, I'll spend more time there tomorrow.

Erica

[angela5674]

What site?  I'd be interested to take the test for my face pain.  Angela

[Quixotic1]

In my experience it IS used as a weight in the favor of MS.  Because it is subjective - ie. no one can see that you actually have it - it would be a supportive piece of data.  I don't know if its predictive value for the diagnosis has been studied.  I will check.

Did you go to that site and take their test?  Maybe you should see an expert in TN and be assessed.  There is a place on that site, I think, for finding a specializing neurosurgeon.

Quix