Confused CIS diagnosis..

Hi so after 5 years and no clue as to what’s going on with my crazy body and no hint as to any previous issues on my scans I have received this, if anyone can put any perspective to it it would be appreciated, thank you. Radiological activity:mri brain and spine 2-9-19 compared to 2016,2017,2018 : juxtacortical lesions in left insula, left superiorr temporal gurus and right inferior frontal gyrus. There is no evidence of periventricular lesion. A previously seen lesion in the left midbrain penduncle dated 24-4-17 is much less conspicuous on current scan. No interval new lesion is identified. Normal appearances of the ventricular system and extracerebral csf spaces. Note is made again of some patchy I’ll defined spinal changes in the cord t2/t3/t4 levels. No new lesion in spinal cord is identified.

Have you just received the CIS diagnosis? Looking back on your posts from 2017 you had abandoned the RVI and were seeing a neurologist in London, but didn’t report the outcome of that.

It is a bit confusing!

I’m not sure if the 2019 MRI scan picked up the juxtacortical lesions in left insula, left superior temporal gyrus and right inferior frontal gyrus as new, or whether they were there back in 2017. They come under the ‘non-specific white hyperintensities’ unhelpful banner - ie can be caused by a number of different things so not very helpful in forming a diagnosis. They will give rise to neurological symptoms though.

They didn’t spot any in the periventricular area - any found there are more strongly linked to MS.

‘No interval new lesion is identified’ - that reads as if they haven’t spotted any new lesions - so maybe those mentioned earlier come from 2017 after all.

‘normal appearance of ventricular system’ sounds like good news, no abnormal atrophy going on there. Also normal appearance of extracerebral csf spaces - again good news, that no abnormal atrophy going on there.

The ill-defined spinal changes are still visible but no new lesions. So something vague has been going on there.

So it sounds as if there were markers in your old scans, but not enough to fit a diagnosis to. I presume that is why you were left hanging in limbo for 5 years. Some neurologists do like to leave people completely in the dark. They seem to think patients are not adult enough to be told about uncertainties.

I’ve just walked away from the RVI and got my GP to refer me elsewhere. They’ve been abysmal. Foot dragged all the way. Took 10 months to get round to doing an MRI scan. And then lied about it. I’ve now learnt to always apply to get my hospital records after any tests. It is a palaver, but at least I have a record of things. They wouldn’t even tell me what blood tests they had actually done! In other European countries patients are automatically given the full copy of any results - treated as responsible adults. Here we are treated like little kids, too stupid to understand anything medical.

Hi, thank you for you message. So yes I had an awful appointment at the Rvi Dr Miller, he was a complete prick, they were dismissive and just awful, so I went to see a private neuro, Dr chattaway in London, he was great and referred me to the national hospital of neurology in London as his NHS patient , he scanned me and I had a lumbar and evoked etc but said all was fine, they reviewed me the following year and said nothing was wrong and my pain was probably fibro but then out of the blue a guy called Thomas Williams who now works for chattaway and is an Ms specialist rang me and just told me all of this!He then scanned me in August last year and this is the updated letter. Thank you

So I guess then that from the previous scans this new guy has decided that there is enough evidence there to make a CIS diagnosis. Good that there has been no further changes. Hopefully it will stay as a one off event for you and you will get no recurrences.

Yes, I think so. And fingers crossed! Hope you get sorted soon too.