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Trigeminal Neuralgia, Optic Neuritis (maybe!) and MS Diagnosis Limbo

Hi everyone,

Joining this forum as I’ve been part of a facebook group for trigeminal neuralgia for a few years and find it’s really helped me out to share and chat with others.

I was diagnosed with trigeminal neuralgia in August 2015 by my GP, when I was referred to a neurologist at the time he confirmed TN but didn’t send me for any further tests. I take gabapentin and it controls the pain well.

I go for a yearly check up with my GP about TN and he always gets me to reduce the gabapentin if I’m not actively in pain. The problem is, the gabapentin controls the pain so well I can’t always tell what it’s masking (though I suspect I’ve had TN constantly since my diagnosis with no periods of remission, as I have problems with tension in my neck and scalp on the TN side along with odd sensations and twitches all the time). I’ve reduced gabapentin twice and ended up having a massive horrible TN flare up both times that took weeks to get back under control. The last time this happened was in February this year and after the flare I lost the vision in my left eye (TN side) for about 6 weeks. It wasn’t vision loss where my vision went dark, rather it went bright and flashy like a photograph with the brightness turned up. It’s got gradually better since then and is about 95% back to normal now, things just look a different colour compared to the other eye and I get intermittent stabbing pains behind my eye.

I went back to my GP during the vision loss episode and was given an on-the-day referral to the eye clinic and a referral back to neurology. The eye clinic checked my eye and took some images and said everything looked OK and it was likely to be neurological and related to TN. They didn’t give me any steroids to speed up the recovery. I had to wait until May for my neuro app and was sent for a head MRI in August. In September I got my results and the neurologist said it showed evidence of lesions and there was a possibility of MS. This didn’t come as a huge surprise as I’d read about links between TN and MS and also have a lot of autoimmune conditions in my close family (PBC, inflammatory bowel disease and hypothyroidism) so raised it as a concern with my neuro during my first app, but still not nice to hear you have lesions in your brain! The neuro didn’t go into detail about the number or location of the lesions, and because I was feeling a bit shaken by the outcome I didn’t ask any questions (I went on my own too, which I won’t do again!). I was referred for an MRI of my cervical spine and a lumbar puncture to investigate further.

Soooo… I had the second MRI and lumbar puncture three weeks ago and am waiting for an appointment letter to get my results now (why does everything in neuro take so long???). Back in September I was feeling really down about the outcome of my first MRI but I’m feeling a bit more positive now and just want to find out the results of the additional tests so I can start moving forward. I’ve had a few other symptoms over the past few years including co-ordination, memory/concentration issues and tiredness that I’d always assumed these were due to taking gabapentin, but maybe it’s all part of some wider neurological issue? I also get nerve pain that runs down my arms and legs (also left side) that I just shook off and ignored previously. I think having TN has toughened me up to pain a bit because it’s so painful I just ignore other things!

Thanks to anyone who to go the end of my babbling haha, I didn’t intend for my first post to be so long!

Laura :slight_smile:

Hello Laura

It’s flipping hard being stuck in limbo waiting for neurological tests to be considered, thought about and eventually the results to be transmitted to you. And a week of waiting feels like a month.

As far as I know, the MRI test has to be viewed by a radiologist, then those thoughts looked at by the neurologist who then decides whether you need an urgent appointment or just a ‘whenever’ appointment.

What you could do is phone the neurologists secretary to ask when you are likely to get the next appointment. I’m always extra nice and polite to secretary’s because ultimately they are the ‘gatekeepers’ for the neurologist. So s/he will be able to either tell you that you should get an appointment soon, or be able to send a message to the neuro to find out what’s happening. It might be that the only information you can get is that you need to phone the appointments team, in which case you can ask them roughly how long it’s likely to take.

We’ve almost all been in the position you’re in now. It’s really not a nice situation. You have my sympathy. Do come back and tell us what happens next.

Sue