I’ve been seeing a neurologist about some issues I’ve been having around periods of dizziness, vertigo, numbness, tingling and fatigue.
As a result I had an MRI and lumbar puncture. My MRI showed multiple lesions in different parts of my brain and the LP showed unpaired oligoclonal bands.
Today I was diagnosed with RIS because my symptoms don’t have a typical timeline. Because of that I can’t start treatment and my symptoms may have to get worse before it can be identified as anything else.
I feel stuck in limbo. The neurologist said that the findings of the MRI and LP were incidental… and not because they were looking as a result of specific symptoms. But I don’t feel like that is true.
I’m in Scotland under the NHS and can’t afford to go private.
Hi @RadioGaGa
I’m sorry you are going through this uncertainty at the moment. It must be a worrying time for you.
I don’t know what unpaired oligoclonal bands means - is that a sign that you DO have MS, or that you don’t? I didn’t have a lumbar puncture as part of my diagnosis.
Did your MRI scan your spine as well?
You might find it helpful to look up the McDonald criteria - they are the diagnostic criteria for MS. They were updated in September.
I hope that you get to a place where you have more certainty about what is happening. The not knowing can be so hard. Unfortunately I think it’s really common that an MS diagnosis takes a long time. Mine was about a year.
I wish you well
Alison
I am sorry that you feel that you’ve been left in an unsatisfactory limbo.
I don’t know what to suggest beyond the grim option the you have identified yourself: waiting for something new to happen. For what it’s worth, in my own case, 25 years ago, the period of ‘watchful waiting’ (this was before RIS had been invented, I think) didn’t take long, and once the next thing did happen, they moved pretty fast and I was scanned (which I had not been until then) and they found what they expected to find and I was diagnosed quickly and without fuss.
Hiya,
It’s a further sign of inflammation. So can be an indicator, although not in isolation.
I think what’s frustrating for me is that it doesn’t recognise the symptoms being experienced just now or over the last few years and offers no way to deal with them or stop them getting worse while still recognising that there are lesions and that this has built up over time.
I guess it’s still a waiting game. However frustrating.
Hi there, it used to be that the McDonald criteria ( a sort of benchmark for diagnosis of MS) required lesions disseminated in space and in time. I think this was changed recently to disseminated in space only plus oligoclonal banding. Might be worth looking up and discussing with your Neurologist?
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