Trigeminal Neuralgia · What To Expect When..

What To Expect From Your First Appointment With A Neurologist On the NHS

I was officially diagnosed with Trigeminal Neuralgia by a neurologist, but I already knew I had TN the day after I experienced my worst symptoms. My first point of call was my dentist, as my pain seemed to be coming from my mouth, and within an hour of me seeing him, he said he was very sure I had neuralgia and to make a GP appointment ASAP. When I told my GP what my dentist had said, she sent a referral through for a neurology appointment. Sometimes your dentist really does know best.

I can’t remember how long my neurology referral took, but I want to say it was around a couple of months. I’d managed to get in for my MRI pretty quickly, so there was a wait between this and seeing the neurologist. When I was called to the hospital, there wasn’t a lot of choice with appointments, but, thankfully, my other half took time off work again to take me.

I was greeted by a receptionist, advised to take a seat and shortly after, called into a room by the doctor. The appointment consisted of a run through of the pain I’d been experiencing, discussing my symptoms, her reading through some of my notes, her explaining there was very little to go off by way of my MRI results and then doing a few strange little tests with me..

If you have ever met me, you will know I have always struggled with my motor skills. I have nothing wrong with me, I have no diagnosis for this – I’m just a clumsy, unbalanced person.

‘Touch my finger, then touch your nose’

‘Walk in a line’

‘Touch your ear, then touch my shoulder’

She’d pulled a curtain around us at this point and my fiance was sat on the outside, calling in, ‘she’s always been like that, it’s nothing new!’

My neurologist then announced that she did think I had TN and the only actual treatment for this, aside from medication, was brain surgery. My fiance and I both said ‘no’ in unison, very quickly. This is currently not an option I’m considering and definitely isn’t something I’m happy to discuss for a long time!

Finally, she said she was going to write to my GP for a prescription of carbamazipine, which I quickly informed her would interact with my birth control. She said she didn’t think it did, but I’d done the research already. She said she’d look into it and then, I later found out, didn’t.. and just sent through the prescription request anyway! My GP later had to write back to the GP to get this corrected for me – God bless my amazing doctor!

The appointment was so fast. I think I was in the room for about 20 minutes in total. I’m not sure what I was expecting.. I think I thought I’d be getting explanations, answers.. help?

Here are my top tips for getting the most out of your first neurology appointment, for the newly diagnosed and those waiting for a diagnosis..

  • Take your questions written down with you, then you won’t forget to ask them.
  • Take a friend, or a family member, to help take in the information.. and so it’s less daunting!
  • Ask for a copy of the letter they’re about to do for the GP to also be sent to your home address, so you can remember what’s been discussed and what you’re about to be prescribed.
  • Be open minded. You may receive a new diagnosis than what you originally thought!

I don’t think I had the best experience with the neurology department at my local hospital. I’m sure this doesn’t reflect all hospitals, or all appointments – everyone has very different circumstances. I don’t know whether it’s because I went in already knowing what my condition was, but I felt like it was time wasted when I was there and I probably didn’t appreciate the appointment as much as I could have. Ultimately though, I got my diagnosis. My condition officially was given a name, so it was worth going, if just for that. If you’re not sure what is wrong with you, if you need diagnosing, if you need help, I’m sure your first neurology appointment will be much more helpful and a better experience.

Please let me know your experiences with the neurologist! ♡

2 thoughts on “What To Expect From Your First Appointment With A Neurologist On the NHS

  1. My wife has had TN for 6 months. After being mis diagnosed by her GP she was sent to a nuerologist…who did diagnose her with TN. he then referred her to one of the top neurosurgeons in Atlanta and her appointment sounded like yours but the doctor was listened and understood what she was going through. He said he probably could help her with the decompression surgery…but she had more going on than that. So he referred her to one of the top nerousurgeons in the world at Emory University. We had an appointment to see his staff but got lucky to actually see him due to a surgery cancellation. Her ordered and MRA and that was 3 weeks ago and we are in limbo waiting for him to read her results. Meanwhile she suffers everyday waiting. Once we find out the results we will come back and let you know what he says….until then it’s like everyone with this dreadful disease…you continue to just suffer…praying for each and every one of you

    Liked by 1 person

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