I haven’t been on her for a while, to give a brief background, (I was on the old site years ago so I recognise some names, although mine has changed now) Been having symptoms for nearly 10 years now, all tests inconclusive, neuro discharged me, although he did tell me he knows I have something neurological going on, possibly 3 different conditions but as they overlap he can’t differentiate to diagnose. Gave up going to the Drs as they just now fob me off as an attention seeker I think.
Just been the optician (been a glasses wearer all my life) as I was having a few problems, tbh I thought the blurryness of my eyes was maybe showing signs of diabetes. So had my eye test, and to my surprise, the optician says I am showing signs of optic neuritis! He asked about my history, I told him. He is now sending a letter to my GP to get me referred back to the neuro.
I am massively split in two over this. As I’ve said I’ve had the symptoms for nearly 10 years (Many years going to Drs and and nueros, last MRI around 4 years ago, clear… discharged, although I do have a srynx in my spinal column and a tumor (benign) in one of my vertabrae that they are not bothered about)
My problem is, I’ve been down this road before, and they found nothing, I was made to feel like I was making it up, especially by my GPs. (I am sure many of you understand this part!) I feel like I am opening old wounds and the same will happen again. But then on the other hand, if MS does show up this time and I get diagnosed, well then I have MS! It’s a double edged sword!
I’m not sure which one will be more disappointing (that’s the wrong word but I’m sure you understand).
If I travel down this road again, for them to find nothing again, I think that’s worse! I’m back to see the optician on thursday, I am having those drops to open my pupils so he can have a good look at the back of my eyes.
Hi, well now that your optician has found something he is concerned about and has written to ask your gp to refer you, then dont worry that anyone will think you are making it up! I`m sure the optician isnt making it up!
Maybe this is a way to be taken seriously and who knows…you may get that elusive diagnosis.
It took me a long time to get a diagnosis…well kind of, as I am awaiting the results of genetic testing re my diagnosis of HSP; I was wrongly diagnosed with PPMS for some years.
I always find it unfathomable when folk get discharged, despite having unexplained symptoms. I guess I am fortunate in that didnt happen to me.
I think it is just a matter of going with the flow. You know the drill, and you are an old hand at managing your emotions and trying to take it steadily - it sounds as though there is going to be a bit more of that as you grind through the process once more.
Perhaps part of your neuro’s message was that, whatever was the matter with you (and there was definitely at least one something that was), would surely reveal itself in time. Maybe that ‘something’ has finally broken cover.
I do hope that you get some answers this time around.
I have been fobbed off for 6 years in by 2 neuros in my local town. I always felt it was MS so I decided to go to London to a top MS neuro Privately. I said to him that I think I have MS but have been repeatedly told that i do not. I said I need someone else to talk sense into me and reassure me that it is not MS. Anyway he took ny scans and the were viewed by the Barts neuro MS team and yes they decided it was MS !
Just wondering if you previously had an mri that focussed on the visual pathway extending from the eye globe. It might be something to request and a VEP. Private mri could cost between £200 - £300 judging from some adverts.
Well optician said eyes look healthy and as I get intermitant dimness in both eyes, he thinks optic neuritis is unlikely, but he still thinks I need to go and have closer exams on the optic nerves and go back down the nuero route. He has written to my gp so we’ll see!
mrbobowen: I’ve had MRIs in the past, last one on brain 2011, but not focusing on the visual pathway, so they’ve never been looked at closely. I had a VEP (is that the black and white checked screen?) back in about 2008. But nothing since.
Moyna: I wish I could do that, however, I was under (and hope to be referred back to) The Walton Neuro Centre in Liverpool, which I think, or so I’ve heard, is the next best thing to London. I imagine it cost a lot! I don’t really have spare money. I don’t work, nor do I have any benefits. My husband keeps me, so we only have one wage coming in.
After 10 years (first symptom January 2007) I would have hoped to have answers by now. I am terrified of going down this route again and still don’t find any answers!
xx