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Hello! Any advice much appreciated...

Hello!

What a lovely supportive forum - just had a little look at some posts. Hope you don’t mind me posting but I’m really hoping for some advice (and reassurance I suppose!).

I have been suffering from Trigeminal Neuralgia since March - my dentist suspected it as there were no apparent dental problems and the diagnosis was confirmed by an Oral Medicine Consultant last week. As part of the consultation the Dr took a medical history which was straighforward as I am generally fit and healthy but when I mentioned that last year I was referred by an optician to see an Opthalmologist following an episode of eye pain and blurred vision, suddenly MS was ‘thrown’ in to the conversation. I say ‘thrown’ because it was quite literally that, the Consultant said I think it would be wise to consider a Neurological cause here… my naive reply was ‘like what?’ and hers was then 'well considering your age (I’m 39) and the presentation of symptoms, MS. And that was it. Other than a referral for an MRI at the beginning of November and an appointment to see a Neuro Surgeon about the TN… I am left a little confused (to say the least).

I have been really careful not to go googling as I am sure it would be dangerous!!! So I suppose what I am asking is has anyone on here had a similar experience/symptoms? The consultant asked if the eye problem I had was diagnosed as optic neuritis - it wasn’t (and I didn’t even know what that was at the time) - there was no conclusive diagnosis, my peripheral field of vision wasn’t very good when tested and I was supposed to recieve a follow up but am still waiting and I do still have occasional mild blurring and lots of floaters. Also, the eye problem was right sided but the TN is on the left - could that be significant?

Sorry for such a long post but hoping someone on here can shed a little light on all of this. I’m trying to keep it all in perspective and not worry too much…

Thanks for reading!

Anna x

Hi Anna, try not to worry as if, and I mean if it’s MS you do NOT need to be stressed out! :slight_smile: And you are wise to avoid google too but I openly admit if I’d known what MS was about, I might have found myself here sooner, who knows…

I was also referred to an opthamologist last summer and no problems were found although I’m a little uncertain of why… peripheral vision is a possibility as I struggle with the test where you have to click the button with the little light flashes… I assume I have a little blind spot.

I ended up being referred as I had some random walking problems, the problems would come and go so it was only when I had a fall that I went to visit the osteopath - she didn’t feel there was a particular thing, rather a few bits and pieces that didn’t quite fit so wrote to my doctor requesting I had an MRI - Doc referred me to the spinal unit and then I got my MRI… then I was referred to neurology as it was pretty obvious from my MRI that I did have some problems. And by that time my walking was getting worse so undoubtably I’d have been to the GP and been pretty desperate and worried.

It sounds a lot like we have involved some really good professionals in our healthcare :wink: If my osteo hadn’t had insisted I sould have an MRI almost 5 months before I saw the neurologist then I’d have probably had a far worse experience of it all.

Good luck with your MRI, I really hope it’s nothing serious. Try not to stress though and do avoid googling :wink:

Sonia x

Ah, my last post went to moderators… anyway, thought I shuld bump this post as it’s gone to the bottom of the page

Soniax

Sounds to me like time for a good chat with your GP. When a person is playing specialism bingo, the GP is the caller and the one whose job it is to pull the threads together (and I must ask you to excuse the mixed metaphors - it is too early in the morning for my inner editor to have come online).

The GP will have had letters from all the varous specialists you have seen and have the whole picture about their recommendations about who you see next and so on (you might have been copied in on these, of course, but that does not always happen). I think you need to ask him/her what the plan is here. If you are having an MRI scan, is that part of a neurology referral with a follow up visit to the neurologist planned? (I would expect that the answer to this is yes, but it would be good to check.)

You are wise to leave Dr Google alone in the main - he is a lousy diagnostician - and I must say that I admire your self-discipline. As MS has been mentioned as a possible thing to exclude, however, you might feel it safe to do a bit of reading up from a respectable source. If you do, the main part of this MSS site is a good and reliable source of information. The wilder and woollier reaches of the Web are most assuredly best avoided, as you say!

I hope that there is nothing too serious amiss and that you get to the bottom of your problems soon. It is always a bit hard on the nerves when something goes the matter and the doctors start calmly eliminating alarming suspects that we would never even have thought of! But that is the way they work, so just try to keep doing what you are doing and not get to anxious about that.

Good luck with it all.

Alison

Hi Anna.

As a fellow TN sufferer, you have my sympathies. Sucks doesn’t it.

Welcome to the forum hon. It is a wealth of knowledge and experience that you will not find anywhere else (apart from those scary Dr Google pages)

I am undiagnosed and am waiting to hear back from my neuro regarding recent tests. My journey started when I developed blurry painful vision too. I also had a noticable issue when looking at the colour red (did you have this?) but by the time I finally got my mri - some 6 months after the event - there was no evidence of inflamation and Optical Neuritis was ruled out. Fast forward to April last year and I developed TN above my left eye. In March this year, I finally got my doc to refer me to a Neurologist who I saw in August. He arranged for me to have tests on my optical nerve (Visual Evoked Potentials) and a special MRI to look at the brain and trigeminal nerve. I guess when you see your neuro, you will be sent for similar tests. I guess the reason why you will be seeing a neuro surgeon is because 90% of TN cases are caused by compression of the nerve by a vein or artery. I was told by my neuro that if this turns out to be the case, then because of my young age (I am 37 - I love my neuro) he would be looking along the surgical route.

I don’t really have anything constructive to add sorry. Like you I still get blurry vision and floaters. Its very annoying isn’t it. Again, like you, it is my right eye but left side of face.

I hope this helps, but please feel free to PM me if you need to chat. I know how scary it can be. Have you been offered carbamezapine for the TN?

ATB Angela xx

I have had 2 episodes of painful vision to one eye worae on movement second time definite blurring not just occasional and that time couldn’t get all the numbers on colour blind test. Told bo structual problem found but let neuro know and have an eye follow up next mth. No reason given to me for pain though A

Thanks for taking the time to reply (and thanks for ‘bumping’ my post Sonia!), it’s really helpful to hear other’s advice/symptoms/experiences and really helpful to just have a chat about all this!

Thanks too for the kind words and reassurance - much appreciated.

Angela, I have tried to PM you but when I click ‘send private message’ nothing happens… any idea why? Our symptoms are uncannily similar so would be good to caht some more.

Very best wishes to you all

xx