Originally Posted by MAT52

I just wanted to update anyone interested on what the oral surgery dentist said today re phantom mouth pain. He is soon to retire and has been training with my neurologist working on overlap conditions. He examined me hard, already havng attended my appointment with the maxillofacial surgeon a few weeks ago - and ran nerve conduction tests on my face as well as examining my mouth and jaw thoroughly.

He agreed that my TMJ is quite mild and that it is not causing the numbness and tingle in my face - which is still a mystery. He said that the fact that I have numbness in some parts of the trimenangial nerve and am sensitive in other parts means it is in my small fibers rather than in the main TM nerve -which would be far more painful - or else the numbness would be continuous all the way along the nerve - which it isn't.

The patients he has who have similar symptoms to mine have MS or occasionlly diabetes - which has been excluded from MRI of brain and blood glucose tests.

He agrees that it is part of the widespread parasthesia not TMJ from bruxism/ stress or arthritis. The fact that it is progressing now to my face means that although it is idiopathic in theory - it should be seen as an inflammatory issue and some kind of ganglion swelling could be at work behind my jaw and throat at the back of my head causing lesions to the nerve there. So he feels this is definitely something that the neurologist needs to investigate and rule out although probably RA related. The dizziness is also outside his area but he feels it may well be related to the numbness and tingle and that I need the area at the back of my head checking out by MRI. He will write to him and explain that this is what he thinks.

I have to say this is almost exactly what my podiatrist says about my feet and the morton's neuromas plus Raynaud's and also what the physiotherapist says about my hands and my jaw too.

He confirmed that is no problem with my mouth or jaw beyond some 2nd class oblation and muscle swelling - similar in intensity and severity to a twisted ankle no more. He says these two sources of pain/ discomfort are unrelated and bruxism wouldn't account for the numbness or tingle at all. He gave me simple physio exercises to do to improve the ache and muscle tenderness and advised me to continue using the guard - but confirmed that bruxism is not a big issue for me.

Also, he told me to avoid anti-convulscant and anti-depressant drugs because they would at best mask my symptoms, which would be unsafe if they are progressive and inflammatory as he believes they are, and give me unwanted side effects too.

The pain in my jaw/ mouth doesn't warrant drugs like Carbamazapine or Gaberpentine and wouldn't help with numbness. Masking symptoms is a bad idea in my case as the root cause needs to be found if possible. If not he recommended acupuncture, relaxation exercises and psychotherapy (which I already have!) to come to terms with the fact that these symptoms are almost certainly here to stay. Didn't like the last bit at all of course but I'm a realist so took it on the chin (numb-ish!).

If I can get the connective tissue disease (could be vasculitis he agreed) well controlled than the pain would probably go, as it does with higher dose steroids, but probably the existing loss of sensation would not now be restored to my face. So small fiber neuropathy confirmed as affecting my face, cheek, nose and around my left eye rather than TMJ.

Mat