Hi all

I haven’t been active on here for about 4 years, but I have a question to ask and would be grateful for your thoughts.

I have had severe TN since June. I am on oxcarbazepine and pregabalin, which have finally managed the pain. In October I saw a neurosurgeon who confirmed I had bilateral TN, but he wanted me to have an MRI to confirm. It confirmed what he thought and said it is probably due to MS, as there was no evidence of obstruction to the nerve.

In june 2011 I was diagnosed with Optic Neuritis following a visit to a Neuro and a MRI. I was diagnosed with CIS Syndrome and would need another relapse to confirm MS.

I still have not been diagnosed with MS although I have all the symptoms: balance issues, pins and needles, fatigue, legs that feel like lead, cognitive issues etc.

I am seeing my Neuro again on Tuesday.

Has anyone been diagnosed with MS following TN? I don’t think I will, but I am intrigued that my Neuro has asked to see me, as he wrote to me in January saying that unless I have had a significant clinical episode, he did not want to see me!



Hi Ness46

I was diagnosed with TN 10 years ago and after an MRI 4 compressions were found on the scan, so i opted for the MVD as medication just didn’t agree with me.

After the op i was still left with the stabbing in the eye and blurred vision. Then i started to get new symptoms, pins and needles, fatigue, balance problems, problems emptying my bladder and sometimes my speech would be slurred.

I have been under so many Neurologists being told different things and finally last year i saw one privately and an eye specialist who diagnosed Optic Neuritis so was put on steroids had MRI which showed active inflammation behind my eye. 6 months later eye deteriorated again so was put on steroids again and told i had had a second relapse, after another MRI scan that showed i had inflammation in the spine.

Am now under an NHS Consultant who sent me for yet another MRI and that has shown an active lesion on the Brain, am being sent for a Lumpar Puncture and had blood tests, then in 8 weeks or so will start DMD’s.

Hope you get some answers at your appointment on Tuesday!


Thanks Jennyakes.

Good luck with the lumber puncture. I would have thought you would be eligible for a diagnosis by now, with all your your symptoms and MR I results!

Well, after 6 years and extensive tests today, I have been diagnosed with MS! Absolutely delighted!!! I know that is a strange thing to say, bearing in mind I don’t know what the future holds, but it stops me feeling like a fraud! No longer in limbo and I will finally get the help I need.

All the best for the future


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Hi, I have had surgery on my trigeminal nerve which was adhered to the arachnoid layer of the brain. I was told this is a common problem with MS, but I can’t find any information on this procedure. Has anybody heard of this before or had it done. Cheers.

Hi. I had a diagnosis of TN in August… lesion right by the trigeminal nerve shown on MRI with other patches. I’ve had an abnormal evoked ssep on the legs giving me leg problems. LP and spine MRI clear. I don’t have an MS diagnosis, but it has been mentioned. I’m back with my neuro on Tues… my gut says MS but the neuro is in sit and wait mode…good luck !