Help Please. Scared

Hi all. Hope your as well as you can be. I’d appreciate comments Please. Optic Neuritis 2011. Unfortunately lost quite a bit of vision Vep test confirmed delayed pathways between brain and optic nerves and Consultant informed me if Mri showed any lesions then I’d be diagnosed with Ms. Fast forward 2020. I suffer from extreme fatigue. GP Says given your history referral back to neurology required. Loads of tests for fatigue red Flags which are all clear. What can I expect from my appointment with neurology On Saturday. If I have to have more mris I cannot tolerate this due to claustrophobia. I’m really scared Appreciate any comments


The MRI is the best way to get a diagnosis.

Ask your GP for something to take eg valium.

talk to the person running the MRI and tell them about your claustrophobia.

Some places have open scanners which would be excellent for you.

good luck

carole x

Thanks so much. I have read about open mri but I don’t think the resolutions are good enough To detect ms. Some scanners are shorter in length with a wider bore which could be an option for me. What do neurologists generally do in the first appointment. Take a history? Order bloods? Do some of the Basic tests. Touching your nose that sort of thing?. Like you say though think Mri is inevitable as Reserarch shows that optic neuritis is one of the many Ms risksI think I will be much more inquisitive this time in terms of questioning etc as the neurologists I saw at Moorfields didn’t tell me anything. My only real symptom is this crushing fatigue so I’m wondering whether that alone is enough to warrant an Mri. I’m thinking probably Yes given that I’ve already had optic neuritis. Thanks for your response it means a lot to get some support


Neuro will likely take a note of any symptoms - history, onset, where and when etc before deciding if MRI is needed

Not sure if you will get telephone appt in which case it will be hard to do standard neuro tetst eg gait.muscle strength, heel-toe etc. My GP did this and sent it on, along with the letter and other blood tests taken which i assume yours has done re fatigue -eg iron, sodium, thyroid as especially for fatigue they will want to rule these out I think ON is I beliveve often a common onset symptom of MS but also stands alone too so hopefully common sense at least will apply and MRI ordered.

MRIs that are open should do the same as those enclosed I thought, as long as the magnets allow for a clear picture and resolution of what they need. I hate them too, and feel sick and lightheaded if i lie too flat these days so dreading mine. I just listened to music and kept eyes shut/breathed to quell the panic but 2mg of valium may well be a good idea if its going to inhibit the MRI being done for you

Mines was for lower spine last time so not even sure if I can get headphones on due to COVID or even if trying to MRI the brain. The noise sounds like someone drilling outside a window, though slightly louder so am hoping so!!

Good luck x

Hi thanks EML. Agree with everything you say in your very kind response to me. Yes had rafts of bloods done by gp Lfts. Kidney. Iron. Other vitamins. B12. Anemia. Thyroid. Everything tbh. My Gp can find no medical cause for it. Think ur right in that I’d be surprised if I didn’t have an Mri as Optic Neuritis is a key symptom of Ms. It can though as you said be clinically isolated. I’ve read lots of medical literature on Optic Neuritis and as you would probably expect there are lots of different opinions about it. In terms of a predisposition to go on and develop MS It remains one of the most clinical predisposition to go on and develop MS.

Claustrophobia needn’t be a show-stopper. Let them know your concerns and they will try to help - it’s not unusual and nothing to worry or feel awkward about. They may, for instance suggest you ask your GP to prescribe diazepam (you would need to get someone to drive you on the day, obviously) and remember, you just have to lie on the trolley in the airy,open MRI room and then shut your eyes BEFORE they slide you into the machine, and keep them firmly shut until they slide you out again. Trust me, it’s breezy and cool in there and not at all oppressive. If anything, you’ll wish you had worn a thicker jumper.

Thanks this is really reassuring