'non-specific' brain lesions and LOADS of symptoms

Hi everyone.

I’m currently in the diagnosis process. Had head and cervical spine MRI (without contrast) and they noted ‘several non specific lesions in the supraprentorial white matter. Non specific’ They said it doesn’t look typical of MS. Cervical spine scan found no lesions. I have so many symptoms that I couldn’t possibly list them all, but the most distressing are numbness (whole face/scalp/neck/ tongue and most of body), weakness worse on right side, blurred vision, fatigue, balance issues, pins and needles and twitching. Most of this came on over the course of a couple of weeks last month, but looking back I have had times where I developed symptoms including nerve pain over the years.

It could be MS despite the non typical brain lesions and lack of cervical lesions (which I’m told are very common). And from my symptoms I feel it’s likely to be. So far I’ve had lots of blood tests so most glaring issues including thyroid and B12 etc have already been ruled out.

They have agreed to scan the thoracic spine but I had to push a bit for this. I mentioned a lumbar puncture but they said they don’t suspect MS strongly enough for that yet. I’ve been so ill and just want answers ASAP, especially since I’ve had issues like these for around 12 years now. I’m female and 29.

I’d like to ask if anyone has been diagnosed with non specific brain lesions and a lack of lesions elsewhere. Or whether it turned out to be something else?

Thanks for reading.

Very many will have been told initially that they only have ‘non-specific lesions’. Some go on to eventually be diagnosed with MS. Some do not. They might have other things causing the lesions - migraine, Lymes disease, cerebral small vessel disease (often with high blood pressure, diabetes, smoking or high chloresterol), to name a few causes.

Good on you for pushing for a thoracic spine MRI. If nothing shows there then you could end up in the dreaded ‘limbo land’.

I had age related changes in my brain MRI, when I had it scanned last July during a week stay in hospital following rapid onset of symptoms.

Despite cervical spine (neck), thoracic spine, lumbar spine MRI scans over the past 10 months, nothing has shown up. I have had a repeat of the cervical (neck) spine scan a few weeks ago, hopefully I’ll get results soon.

Thank you for your response. I thought it might be the case that many people with MS have non-specific lesions as it is such a variable condition. What makes me strongly suspect that I have MS is that my history of symptoms had had clear periods of flare ups and then improvement or stabilisation.

To be honest I would have a lumbar puncture immediately instwad of the scan if someone offered it now, despite it being an unpleasant procedure, but they said they wouldn’t do that so soon. I feel I’m struggling to be heard as I appear OK externally but as mentioned I have many severe symptoms and they only seem to be getting worse currently unfortunately.

My fear is that as I’ve had this so long and it hasn’t been diagnosed I might be moving into a progressive course.