[dmplaura]

Briefly... I was told I had TMJ (definitely the lesser of all evils) and had an EMG at the time, with a nice 12 page report from the dentist, explaining that Trigeminal Neuralgia was also a part of this.

I had what I suspect Trigeminal Neuralgia 'attacks' a few years ago, possibly my first symptom linked to my MS? (it's seen in a percentage of cases that TN attack is the onset symptom for MS... followed by a year approx. of no symptoms, and then further symptoms... which is exactly what I experienced).

I now, day to day, in my 'bad' times with MS, suffer mostly left sided dull or burning pain, from the top of the scalp to the cheekbone/cheek. Occasionally, I also get twinges of burning pain in my right cheek as well.

Some know my mouth history. I got that mostly cleared up. I was avoiding irritants as well and decided in the past couple of days I'd reintroduce them (namely ketchup and tomatoes). Well, the burning mouth returned with a vengence, but at the same time, my burning head pain did as well on the left side.

I'm so frustrated at this point. I hold a 12 page dental specialist report stating that I have trigeminal neuralgia (or highly suspected, I don't know if he can truly dx through an EMG in his work). I fully believe this is what I'm dealing with. I've been told by many that it certainly sounds like TN, over and over again.

How do I get a definitive diagnosis of trigeminal neuralgia? To complicate matters, I believe it's atypical trigeminal neuralgia (my pain pattern fits this much more so than the traditional quick jab and stab... which I DID experience years back, but not in recent years).

My neuro's just stuck on me doing my DMD and getting regular blood work taken to ensure my body's running up to snuff. My GP wasn't keen on prescribing me Clonazepam for my burning mouth to begin, but it turns out that this drug does help my suspected TN or ATN to a large degree. Problem is? She wants me off it. Bigger problem? I've failed both Carbamazepine and Neurontin due to side effects. How else am I going to control what I believe is TN or ATN, let alone find a doctor that believes that I have EITHER condition that my dentist has already, in my opinion, found for them?

It's this alone that's causing my pain misery. My other MS symptoms are almost dormant at this point. The TN or ATN is just unreal when it acts up, as it has done today.

I just needed a nice big long rant. After reading an article in the paper recently regarding how doctors find 1 major illness and ignore the others when 1 is located, I'm certainly seeing it for myself. Grr.

As an offside, would asking about Nortriptyline even be worthwhile do you think if I'm facing TN or ATN? I kinda think yes... that at this point, ANYTHING that I can tolerate and could help is worth trying.

To think I've told them I'm going back to work Nov. 24th. Sigh. If I tell my neuro all this mess on the 17th, maybe he'll reverse that decision on me.