Finally got through!

Finally got through to the neuro’s secretary regarding my new flare up of symptoms (TN, jaw spasms). I now have another appointment booked for neuro next tuesday lunch which in one way I’m glad about as I’m getting seen and might get help but in another sense dreading as I felt like crying when I saw my neuro last time as he was very rude and dismissive, I left feeling quiet upset and I have a clinic of patients to see straight after my appointment this time.

Hopefully he gives me some idea of what’s going on this time. Last time it was like getting blood out of a stone and in the end all I got was you’ve had some spinal inflammation deal with it. Well TN blows that theory out I think because as far as I know the trigeminal nerve nucleus is in the brainstem not the spine as such (if I’ve got my anatomy right).

Hope he does decide to send me for LP and evoked potentials this time. I’ve had two MRI’s the same with subcortical hyperintensities but new flare up symptoms should warrant further investigations I would have thought.

I have a GP appointment booked later in the evening so if the neuro appointment goes terribly I can ask for a second opinion and also discuss whats the best way for the GP to see me when I have something acute as it’s very difficult to get appointments with them and \I’ve been trying to manage my symptoms for almost three weeks.

Wish me good look for next tuesday guys. I’ll make my list of the top four symptoms and a line explaining I’ve had two episodes of new symptoms since the last review (for all the good it did me last time).



Fingers crossed for you.


Good luck, I really hope you get listened to this time. I think having a professional who is so dismissive is really disheartening. I’m still trying to come to terms with my appt yesterday, it really has knocked me for six. I hope that you are treated better and at least have further investigations to rule things out. :slight_smile: xx

Good news!

Yep, the trigeminal nerve is brainstem not spinal cord - he really can’t get away with saying it’s not new.

Good luck!

Karen x

Good luck for next Tuesday, let’s hope he actually listens and explains.



Thank you all for your support over the last few weeks and all the good luck I really appreciate it. Will keep you posted on what happens on tuesday.

@Karen - yes I agree :slight_smile: unless he disputes I have trigeminal symptoms (which I think will be quiet difficult as I’ve gone to good lengths to rule out other stuff) he has to come up with a better explanation.

Thank you



Good luck on Tuesday. Hope it goes better for you x