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I’m so confused. Help if possible.

Hello everyone. Story starts about 2 years ago with odd neurological goings on. Had an mri without contrast which was reported as Normal. I requested a copy of report from hospital and it said there was one area of hyper intensity which was considered normal for the position it was in. Saw a couple of neuros who weren’t sure what was going on and I requested a referral to a specialist. Had another mri done also with other tests and it was reported as normal again. The bit I’m confused about is this report says there are two area of hyper intensity but no evidence of demyelination. They told me the white spots are normal and brain is healthy. It’s playing on my mind big time how another white spot can form in the space of 6 months and that’s normal. I’ve read the brain post that Rizzo put up but it doesn’t mention white spots being normal at all. Im really confused.

Hello

I think the problem for us non specialists is that we just don’t know enough, so have to rely on neurologists and other medical staff to, a) conduct the right tests, b) read the results of the tests correctly, and c) convey that information to us in a comprehensible and meaningful way.

So, you are happy that the right tests have been done (a), but are questioning whether the tests have been properly looked at (b) and even if they have, they’ve not been effectively explained to you (c).

I think that white spots in some areas of the brain are in fact normal, whereas the same description of white spots / lesions / hyper intensity in different places in the brain denote demyelination and are likely to denote MS.

This at least is my unscientific view of the results from an MRI which is described as ‘normal’. But I do totally understand your confusion. And I think you could do with it being better explained in terms that you can understand. In particular with the thought that they same words are being used to denote two completely different scenarios.

Have you now been discharged by the neurologist? Or do you have further appointment(s) planned? If you do have a further appointment, then you perhaps need to get some more detail, and ask direct questions about the scans. And take someone with you who can help you to get the answers that you need and who can aid in remembering all that’s said.

If you’ve been discharged, have you been sent a copy letter yet explaining the findings to your GP? If so, did it help? If not, or if the letter was just as confusing, try writing to the neurologist and asking these questions. Tell him/her that you are utterly confused. And explain why. Ask for an explanation of the MRI in terms that you can understand. In particular how is it that white spots in the brain can sometimes be evidence of MS and other times normal? If you copy your letter in to your GP, at least you’re leaving a paper trail which the GP can follow up on if the neurologist still isn’t clear.

Good luck.

Sue

Yes I’m happy I’ve had tests done and I’ve not had a battle getting them. I have a routine follow up in 8 months but that may be In part because I told him I would be unhappy to be discharged. My last appointment was for all the test results. I had some other test done too. With regards to mri I was told nothing remarkable to report, that it had been looked at a few times and that everyone has white spots but mine are normal. Well I knew from my previous mri that there was one area of hyper intensity that for where it was. It was considered normal. I got letter through the other day explaining there are two areas of hyper intensity but there is no evidence of demyelination. I’m just suspicious as to why the second area wasn’t visible on the first mri. I could be reading too far into this and my family say I should blooming well listen to what the neurologist tells me but I’m having shitty symptoms. My nerves feel like they are shot to pieces… and I don’t mean in the emotional sense. Cheers for your message above. Il have to do some digging.