Still Waiting - VEP

I can’t believe I’m still waiting after having seen a second neuro on 31st October, during which he refused to put a name to my condition (not even the FND/CFS I’d been given before), suggested medication (Duloxetine - scary side effects so I’ve declined) and told me that he’d arrange a Visual Evoked Potentials test at Addenbrooke’s because of my ‘possible optic neuritis’.

I have yet to receive any sort of follow-up letter, so I phoned the secretary and she said that she’d chase it up. If I get nothing by Friday I will have to 'phone again.

I still feel that something is going on besides the FND/CFS/ME.

If the VEP test (whenever that happens) also comes back clear then I will run out of avenues to prove or disprove MS. I just need to be sure one way or the other. This middle-ground is so frustrating! However, at least I am benefitting from seeing an excellent specialist OT and am learning ways to manage my symptoms, finally. I’m still using stick, wheelchair and mobility scooter as required but feeling better about it. Waiting for a PIP mandatory reconsideration reply too…Please, postie, bring me good news!

Hi Reikiblossom,

​What a frustrating time!

I’m glad you have an excellent specialist OT and are learning ways to manage your symptoms. So te managing symptoms side of the matter is being addressed.

I hope you get some answers!

Thanks, Vithfari. I’m so glad this board is here for those of us carrying a big ‘?’ still. I wish there was a more definitive test for MS. I’m worried about getting worse but hoping for an opportunity to get some clarity. I feel so stuck, diagnosis-wise. The long waiting times do nothing to help patient’s mental health, do they?!

My GP gave me a copy of the letter from the neuro (that I hadn’t been CC’d on). Basically, he was convinced from examination and clear MRI that it was not MS and recommended Duloxetine and CBT…and was grateful if my GP could take it from there. I am being referred to Addenbrookes for a VEP but that might take a while. My GP agreed that doing the test before trying the medication was a sensible idea.