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ON, normal MRI scan but have other symptoms too

hello, hoping someone can offer some advice?

I was diagnosed with optic neuritis 6 weeks ago, I had an mri scan 2 weeks ago and just attended my follow up appt with doctor in the opthal/neuro department, he told me my mri scan was of the orbits and brain and there was no sign at all of demyelination or lesions and that I couldn’t have asked for a ‘better baseline scan’ and that my ON had healed 99% (even though I’m still struggling to see).

i told him I have weakness in my legs and experience a numb hand or arm every morning upon waking. Because of this he is referring me to neurology but told me it was my decision (I said yes!)

I noticed yesterday I have a very light tingling in my big toe and upper foot and it’s persisting. I feel really worried now as I felt quite reassured after seeing the doctor.

he told me that because I had a clear mri my chances of developing ms were around 25%, but this could chance if the neurologist uncovers something else.

i just wondered if anyone had any advice or thoughts or a similar experience?

Thank you x

When i first developed quite bad symptoms which mostly resolved in 2011, i then started having tingling and numb patches had an mri 2015 all was clear had a few other tests all clear. Forward 2017 i then developed lesions on the brain. But still not ms. Now 2019 i had like you optic neuritis had mri of orbits and brain new lesions and I’ve now been diagnosed, he said I’ve probably had it for several years but just wasn’t showing. I hope your optic neuritis clears soon i know its really horrible. You will get some answers but with my experience it took a while to diagnose. Not saying you have it either, but everyone is different. Take care im sure neurologist will be help :slight_smile:

I had what could have been demylinating lesions on my firs brain scan, the radiologist scuppered it by saying he felt the lesions were from my age not demylinating. having had several attacks of ON, and a positive VEP test at the beginning, in between i had MRI of spine, then again at the end after another bout of ON in 2016 another positive VEP and diagnosed with progressive MS.

If it was say PPMS the lesions are usually found in the spine, more then the brain and its better to wait for MRI after an attack of ON, as it doesnt always show up. I would just wait and see now what happens, with the neuro appointment it is a long way to diagnosis but if it is MS it will show itself one day. Unfortunately.

Its a frustrating process. 2000 - 2016 for me.

Hi Pippa86, your situation is very similar to mine. I had ON in January this year and also experienced unbelievable fatigue, brain fog, numbness (I actually picked up a hot tray out of the oven and couldn’t feel it) and reduced feeling in my legs. My right hand side was worst affected. The hospital eye clinic referred me to a neurologist when I was diagnosed with ON. They also ordered an MRI of my brain and eye. I saw the neurologist really quickly (before I even had my MRI scan). He also ordered me an MRI of my cervical spine too. He did an assessment on me, listened to my symptoms and although I hadn’t had a scan he told me he strongly suspected I had MS. He was expecting my MRI scan to light up like a Christmas tree and that it would be a simple diagnosis. He even said he’d give me a call to discuss the results when they came through (I’m under NHS!)

however, only the scan of my eye showed damage, my brain and spine were deemed as normal. I also had blood tests done too, have you had these done? They can help rule out Lymes etc.

I’ve since seen the neurologist another 2 times and he’s ordered further MRI scans to see if there’s any change and I’ve also had my thoracic spine done too. He says that hopefully i will just stay at CIS but he says my risk of another episode is possivld and if it does happen, a diagnosis would likely follow. It might just be a case of waiting for it to show. But it also might not happen.

i can honestly say between Jan - May was awful. I felt useless and wondered if I’d ever be able to go on long walks again like we regularly do as a family. My walking is now so much better and the fatigue has lifted. I’m still not back to how I was feeling before. My legs are still not 100% and I have regular spasms. In the time I felt at my worst, it seemed that time dragged and being in limbo completely consumed me and I struggled to see the way forwards without any official diagnosis of anything. Although I’m still not feeling my normal self and I still can’t get back to running, I’ve stopped letting it consume me and I just think what will be will be. I never wanted an MS diagnosis, just an explanation of what was wrong. I’d of been most happy with a diagnosis of ‘x’ and take 2 tablets a day for a week and you’ll feel back to normal (I think that’s what everyone wants!).

I think it’s definitely worth being referred to the neurologist but the best advice I ever got from this group is don’t expect answers quickly or sometimes even answers at all. Write a time line / diary summary of your symptoms to take with you to your appointment. Wishing you all the best.

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Befuddled a very wise answer.

going back to what you wrote. I was getting baked potatoes out of the oven my husband was stood watching me, and when i had finished he grabbed me by the hands and took me to the sink i wondered what on earth was going on, and then he suddenly said jeez what the hell are you doing it appears i had taken the boiled potatoes out of the oven with no oven cloth nothing, just with my bare hands and never felt a thing. I was lucky as i have tough skin lol no real damage but i never felt the heat, whether it was my brain switched off, or my hands numb i have no idea.

over time i dont have an oven anymore as i have behaved very stupidly with one.

Thank you for sharing your experience Sarah. It’s a long and worrying road isn’t it? Have you started on medication?

Sending positive wishes

Pippa xx

Thanks for sharing your experience Crazy Chick. Do you take medication for your MS?

I am just a big ball of worry at the moment, and having the residual effects of Optic Neuritis really isnt helping things!

Take care xxx

Thanks Befuddled, I have sent you a direct message, I hope that’s ok!

Pippa x

Dear me, that sounds awful - so sorry you experienced that! x

Hi pippa Im not on any medication as yet im seeing the ms nurse in January, i will update you on it. Seems a long slow process. I have just researched things like cutting gluten out trying to eat more healthy etc no alcohol. Although i think i have some at Xmas :slight_smile: All the best x

Hi i was finally diagnosed after another positive VEP in 2016 with progressive MS, i decline meds as they made me feel horrible. its only for nerve pain, and i manage that myself. My last ON attack took nearly a year to settle down.

the more i worried about it the worse i felt to be honest. I know now after the first attack in 2000 which was dismissed that it will all settle down again. which it does.

worry makes it all so much worse, but hey why wouldnt we worry. but honestly i have been there and i know that things do settle.

xxxxxxx