After being definitively told by a neurologist in March that I do not have MS and that my symptoms are purely functional, I have had another flare up of symptoms with suspected optic neuritis.
I had a suspected bout of optic neuritis in March 2023 however the eye specialist couldn’t see any visible swelling or inflammation in my eye so sent me for an MRI where he noted a ‘definite change’ in my optic nerve and sent me to neurology (who said my MRI was clear)
I saw my GP on Wednesday after severe eye pain, visual disturbance and weakness/weird sensations in my right arm and hand. They sent me to A&e who suspected optic neuritis. They referred me to the eye specialist and to neurology with neuro to decide if I needed an MRI. And today I received a letter with an appointment for an MRI! I saw the eye specialist today who couldn’t see anything physically wrong with my eyes and said it’s likely just migraine (i don’t think it is because my migraines are very distinctive and I haven’t had one in years)
They didn’t confirm or rule out anything as they want to wait for the MRI but they did ask if I had MS in the family (which I do on my mums side)
I thought I could put all this behind me after being told very resolutely by a neurologist that it’s not MS. Feeling very frustrated and I feel like I’m back at square one
1 Like
That sounds very frustrating for you as well as worrying. I can imagine how you feel like you’re back to square one, but it does sound to me as if you’re making some progress toward finding out what is the matter. I hope that turns out to be so and you get some clarity soon.
1 Like
I do feel like I am making progress. My father-in-law is really into photography and photoshop and has offered to make me a visual mock up of my vision with the blank spots so that I can show the consultant because I’m not very good at explaining it. Doctors make me nervous and nerves make my brain fog worse so I can never get the words out!
My partner has also offered to come with me to my appointments to help me out as I find it so much easier to talk to him about my symptoms. Thankfully things seem to be moving a bit more swiftly in my new area (I’ve moved since I last had investigations and now fall under better hospitals) and they seem to be taking me a bit more seriously.
Having been through it all once before I am going to be a bit more pushy this time, I’m not rolling over on bull***t dx’s like just migraines or just fibro because none of my symptoms match up with it! Currently sat at work writing this with burning pins and needles over my hips and lower back - that’s new!
1 Like
I think it is a very good idea for you to take your partner with you to the consultation. I did the same in my early MS days. I don’t anymore because I’m an old hand at that game. But I have a new ailment to deal with now, so he’s back on ‘prisoner’s friend’ duty. 
1 Like