Hi just wondering if anyone can advise? I have had an mri scan and initially was told by my neurologist that i had two areas of high signal in the periventricular regions and that was suggestive of demyelinating disease only to be told in the same letter that i did not have ms. At this point my gp wrote to my consultant and asked for clarification as they are both the same but i was then told in the 2nd letter that i only had 2 lesions and that 10 or more would only confirm ms. Can anybody please offer some advise as i need to know if this is something i need to push with my gp/consultant.
It is so confusing isn’t it but what it boils down to is the McDonald Criteria which is what you have to meet to be dx with MS.See McDonald criteria | MS Trust In brief it means they need proof of two different attacks. Essentially that’s the 'multiple" bit and that there is something actively happening, not just a one off event or general ageing. They may suggest a Lumbar Puncture to get an indication of if this is likely to become MS (you don’t have to agree and it is not 100% accurate) and then they might diagnose you with Clinically Isolated Syndrome, which means you may go on to develop MS. The road to a definite dx of MS can be very long… quite often people are left in limbo for years, but that’s because neurology is so complex and a couple of white spots on their own isn’t enough to diagnose anything. The above is just my personal experience and what I think I’ve learned along the way. Others may be along to correct me. On my phone so the paragraph ing will have disappeared. Sorry about that, I know it makes it harder to read.
I was diagnosed after having 2 relapses in 3 months even though my lumber puncture was negative, but I still had an mri due to the severity of my symptoms. The results showed an increase of lesions - a total of around 5 I think, 3 on myy first one where I was given a clinical isolated symptom… I’ve not heard any mention that it has to be 10 just evidence of progression. I realise sitting and waiting for a second episode, which might not come, could be fustrating, but some of us on here have chosen to take a string of vitamins, including vit d & k, calcium, magnesium and biotin, as well as following a health diet (no dairy or red meat) aimed to help slow down progression and help reduce symptoms. Currently I’m in between DMD’s and looking after myself is the best way of keeping positive about it. Take care, Sharon x
I dont know im very confused ! As far as i am aware i have had 2 episodes but it was difficult when i had my consultation as i went for bad headaches that were situated in my eye and this is all the neurologist seemed to concentrate on i explained about my previous symptoms and he said it could be a benign ms and that a brain scan was needed. It then got even more confusing with the neurologist changing tact on his 2nd letter - very confusing!!!
I don’t see that he changed tack. Perhaps your confusion is the issue of demyelinating disease being the same thing as MS- it isn’t necessarily. It could become MS but the Neuro doesn’t think there is evidence for it yet. There are other causes for demyelination, and indeed it might not be clinically significant at all. However, you could always ask for a second opinion. I know it is really tough being in limbo and you just want someone to give you definitive answers and they just don’t have them.
This is the thing… the advice i have received is from my gp and she is just as clueless as me tbh and she openly admits that lol thank you for clarifying the differences - these are the bits of information i am missing as they are just long words to me! Thank you again xxx
It seems to me that you need to get some clarification from your neurologist.
It appears to be completely random as to when and how neurologists diagnose MS. They talk about the McDonald Criteria, but some people are diagnosed with one episode and a few lesions, others have more than one episode and less lesions. Some people are diagnosed with negative results from a lumbar puncture, whilst many are positive for oligoclonal bands in the CSF but are not given an MS diagnosis.
Essentially, you need to speak to the neurologist and find out what s/he thinks. The term ‘benign MS’ is mostly something that means nothing to most MS specialists as far as I can work out. It’s more like they just aren’t sure. If they’re suggesting that you’ve had a one off event, then surely they’d call it CIS? Or it could be RRMS but just be the first relapse. But you can only find out by talking to the expert. On which topic, I’d ask whether your neurologist is an MS specialist, if not, maybe they could refer you to one?
If you don’t already have an appointment scheduled with the neurologist, then try phoning his/her secretary and asking if one could be arranged. Or ask your GP to write to the neurologist for the same thing (might take longer, but worth going down this route if option one doesn’t work). If you have a neurology appointment but it’s a long way off, then ask the neuros secretary to move it forward for you.
i explained about my previous symptoms and he said it could be a benign ms and that a brain scan was needed. It then got even more confusing with the neurologist changing tact on his 2nd letter - very confusing!!!
Do you know when your Neuro will see you again?