Hi everyone. I am writing this with the hope that someone could possibly explain something please. I am diagnosed with Optic Neuritis and have now been referred for LP. I have received a copy of a letter that has gone to my gp with the findings on my MRI. I have been googling all day but just slightly unsure of what something means. It says "showed discrete hyperintense foci in the periventricular white matter with somewhat linear configurations. These are in keeping with demyelination. These findings confirm dissemination of CNS inflammation in space, but not time(as required for a diagnosis of MS). Can anyone briefly explain what this means at all. I’m confused with the time and space thing. I’m not due to see my cons until after my LP. He’s also mentioned he will look for oligoclinal bands. Thanks so much for reading Emma
hi emma
the traditional theory is that the lesions need to be disseminated in time and space.
the time thingy means that the lesions happened at different times, so you need old ones and new ones.
however there has been a lot said on making diagnosis earlier so you can be treated earlier.
fortunately i had loads of lesions and a very forward thinking neuro.
good luck
carole x
Thank you for explaining Carole, I really appreciate that. Do they use the McDonald criteria still to diagnose? I’ve just been having a quick look. If I show positive for oligoclonal bands, do you think I would get a diagnosis or wait until anything else happens. I’m probably not going to see the cons for weeks now until after my lp with some results! Thanks again Emma x
i would be likely to challenge it if i had the bands, saying that i was under the impression that the latest thinking is to catch it fast and hit it hard.
please check up on what i’ve said.
i mean well but have a habit of making mistakes (blame it on the lesions!)
i think that many neuros still use the macdonald system.
they could be wrong!
carole x
Hi Emma,
My daughter has had symptoms for almost two years and as her dad has relapsing remitting MS we were naturally very concerned. The first neurologist she saw dismissed her, saying she only thought she had MS because her dad has it! Her symptoms worsened so we paid for her to see another neurologist who took her symptoms more seriously. He referred her for an MRI that showed extensive changes in the cervical spine and head with clear evidence of demyelination, ‘highly suggestive’ of MS. The problem was that he was unable to tell how old the changes were so dissemination in time and space was not clear. She has since had a follow up MRI and once again there was no evidence of active lesions. She is currently waiting to see the MS specialist again but we fear she will not be given a diagnosis and therefore no access to treatment or advice from the MS nurse team (who are amazing). It is such a frustrating time, she feels in limbo and although the results of the MRI suggest relapsing remitting rather than a progressive form of the disease (which the specialist originally suspected) we feel we are no further forward. Like you, it may be that the next step is a lumbar puncture but the waiting is just awful. I really hope you are soon able to get the answers and reassurance you need. I wish you all the very best.
Many thanks for your reply Shaunagh. The whole criteria seems ridiculous for diagnosing doesn’t it. My neurologist talks about MS to me but then says can’t diagnose you yet. I really hope you get some answers for your daughter too. Waiting for the lumbar puncture now so I’m hoping that will be another step forward. Like Carole mentioned above. It does seem to be how pro active your cons is! I really appreciate you commenting and I hope you can get some answers for your daughter soon. Emma x
Hello,
As said above, a diagnosis of MS requires dissemination in space (evidence of lesions on multiple parts of the CNS) and dissemination in time (evidence of attacks on two or more seperate occasions - either from MRI or clinical evidence). It is, I think, possible for diagnosis to be given off of a single clinical event and single MRI - if the MRI was with contrast and simultaneously shows enhancing active lesions and dull old ones and lesions in multiple parts of the CNS. This is what my initial MRI (after an episode of numb toes) showed. The issue is that even if you can get to a diagnosis of MS by this means, it doesn’t get you any further forward with treatment than a diagnosis of Clinically Isolated Syndrome (CIS - often the label given when MS is suspected but dissemination in time can’t be shown). Unless you have a diagnosis of “active” RRMS you are only eligible for the same drugs available for CIS (eg rebif/ copaxone). Active RRMS requires evidence of two attacks in two years - and is the diagnosis required for techfidera or lemtrada (being the more effective and highly effective drug options for the newly diagnosed).
I got my diagnosis of active RRMS when a second scan (3 months after the first) showed one new silent lesion (I’d had no new symptoms) - and started lemtrada 6 weeks later. I’ve not had an LP or any other tests.
K xx
Thank you so much Katy. That has explained so much to me. I’m trying to understand and all I had to go off was a letter with lots of terms on it that was sent to my gp. I know I should wait to see the cons but that is likely to be after Xmas I imagine now with my lp results. I’m trying to educate myself as much as I can for that. Thanks again for your input. Explains so much to me Emma x