I haven’t been well for 13/14 yrs and was told it was m.e/cfs. I had an mri last year and it showed 5-6 lesions. I had a lumbar puncture which was negative and an evoke potential test a few weeks ago which tested my optic nerve. I have just got a letter from my neuro saying the test came back normal. It say’s to leave it and see him in a years time and obviously maybe something will happen in the interim that will make matters clearer. I don’t know how to feel about this, i am confused because the day i had the evoke test my left eye was feeling odd etc so i thought if it was ON it would have shown on the test. Has anyone else had this outcome? I feel like i need to know why i feel ill and why have i got lesions on my brain at 44 yrs old.
Hi Zipster, This situation is not at all unusual. Even if there are confirmed lesions, the diagnostic criteria require proof that they didn’t all come from a single one-off incident. This is not possible to prove, just by looking at the MRI, as it doesn’t give any indication of the relative ages of the lesions. They might all have appeared as part of a single episode, or separately, over a period of years. So the only way to prove it wan’t a single episode is to wait a while, and see if there are new lesions. If there are, then obviously it can’t have been an isolated incident, as it’s still happening. Hope this helps, Tina
Thanks Tina. I had an mri when first ill and 5 yrs ago and they were both ok even though i hadn’t been well so obviously somethings happend from 5 yrs ago until my scan last year. I suppose like you say i will just have to see if he sends me for another mri next year to see if there are any changes. I was sure the evoke test would have been abnormal because my left eye feels strange and i keep getting pains behind my eye but it came back normal.
Hi again,
I had a normal VEP, yet am still diagnosed. It’s not conclusive proof either way. An abnormal VEP would lend weight to an MS diagnosis, but it’s not essential. I only had to wait six months for a re-scan, which found additional lesions. Unlike you, I’d never had a clear scan, but that’s probably because I’d never been scanned at all until pretty late in the history of all this.
I started off at Rheumatology - who don’t - as a rule - do brain scans.
I was diagnosed with wear and tear (“unusual, at your age - but some people are just like that”), and discharged with advice to rest and take ibuprofen. So I did my best to ignore symptoms for several more years, naively thinking that if it was anything serious, they would have found it, so I must stop being a wuss…
That stopped the morning I woke up and couldn’t feel my feet - although they had stopped hurting! Although MS was still not suspected, but rather a slipped disc, I ended up in the right department (Neurology) this time, and it didn’t take them long to work out the scans didn’t look like a slipped disc - or wear and tear either. A brain scan followed, and that had half-a-dozen lesions.
So it was then that I had the (normal) VEP, and the neuro said he’d scan again in six months. Six months later, new lesions, and that, as they say, was that.
I’m not sure why your neuro means to leave it as long as a year - unless, as you hint, he anticipates something happening before then, which would make things clearer. So definitely report any flare-ups or new symptoms during the year, as it might be the missing piece of evidence, that lets them say: “This definitely wasn’t a one off!”
Tina
x
I had 2 episodes and 2 MRIs with lesions on my spine and brain. They wouldn’t confirm the diagnosis though and I was told to wait and see if anything further happened. Two months later I had a big relapse, a positive lumbar puncture and more lesions. It’s now definitely RRMS. I think they need a lot of evidence before they will give a diagnosis and they need to see you at the height of a relapse. The tests are often inconclusive.