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Think the neurologist made a mistake

I saw the neurologist today and the nhs MRI said “2 foci of high signal changes adjacent to left frontal horn with morphology of demylenation.” I had a MRI through bendeden and he said “a few non specific White matter changes not thought to be excessive for her age (42). It also showed a slightly larger focus of periventricular White matter abnormality adjacent to the corpus callosum and anterior body of the left lateral ventricle which is thought to be suggestive of demyelination in terms of its location but not morphology.” I saw that MRI and there were 2 small spots and the one he is talking about is larger. My follow up appointment is in a year. Am I reading it wrong as I think they are saying different things?

I’m also annoyed that he gave me a list of blood tests that I need. They are checking for things like lupus and autoimmune conditions. He could have ordered them before and discussed the results then. Now I know what they are thinking but can’t get my blood tested for another 2 weeks.

It has been said that the only reason I have a follow up appointment and is because they are covering themselves as my first scan was a private one. Surely if there was nothing at all of interest on the scans I would have been discharged? I currently don’t have a diagnosis of anything other than demyelination. My LP was fine.

Thanks.

You're right - the two reports are completely different.

"2 foci of high signal changes adjacent to left frontal horn with morphology of demylenation" means two lesions next to the front of the left lateral ventricle, i.e. 2 periventricular lesions.

"a few non specific White matter changes not thought to be excessive for her age (42). It also showed a slightly larger focus of periventricular White matter abnormality adjacent to the corpus callosum and anterior body of the left lateral ventricle which is thought to be suggestive of demyelination in terms of its location but not morphology." means a few spots in the white matter that could be due to a number of things and that might be age-related plus a larger lesion next to the left lateral ventricle that's in the right place for demyelination but doesn't look right for demyelination.

I have a few issues with the second report. First of all, and this is purely my (unqualified) opinion: age-related lesions are a b*ll**** excuse. Lesions are not normal. Yes, there are places in a brain where it is normal to have white spots, and yes, a fair number of older people (30% according to one of my sources) have white spots, but 42 is not old(!) and "age-related lesions" are not nothing, e.g. they may be caused by vascular problems. If you have lesions where another 42yo, asymptomatic woman would not, then they need to explain them! Second problem is the morphology bit. Demyelination typically causes nice, clean edged, oval lesions, but there are other types too. So, exactly how does this larger area not conform to demyelination? Could it be one of the less common types of lesion? It shouldn't be there, so what is it?! Thirdly, why is there no mention of the two smaller periventricular lesions?

Btw, I should say that it is normal to have white bits at the tips of the ventricles - I don't know if this was what you saw on your MRI? A radiologist wouldn't make this mistake though, so you can safely assume that the first report is referring to definite lesions. Perhaps these weren't visible on the second MRI though and that's why they aren't mentioned in the second report? It's certainly possible.

Hth.

Karen x

Thanks. On the MRI I saw there were two small White dots and one that was a couple of cms. I really don’t understand why the reports are different. Surely something that size wouldn’t disappear? It was about 2 months apart and neither were done with contrast. I don’t know how to challenge the consultant as I told him at the appointment that it was different but he just said the results had been checked. Glad it wasnt due to my age that meant I thought he was wrong!

Also he said that I need 7 of them to have MS and not 2? Think I will try my gp tomorrow as not feeling confident over what has happened.

7?! Oh boy - that doesn't bode well. The latest criteria state a minimum of 2 (at least 1 in 2 of 4 MS-typical areas). Even more worryingly, the number mentioned in the previous criteria was 9, not 7. Maybe he meant 7 more?? Even then, he's out of date!

Re something disappearing - there are a number of factors that determine whether or not something will be visible on MRI including strength of scanner, type of scan, size of lesion, thickness of slices used to form the images and slice positioning. It's complicated, but it is entirely possible to detect smaller lesions in one scan and to completely miss them in another one.

I suggest you print off a copy of the 2010 McDonald criteria for your GP. Google "Polman et al. Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. ANN NEUROL 2011;69:292–302". It's free to download. This paper details the latest criteria and clearly states the two lesions thing. That your neuro isn't following these criteria would be enough for me to want a second opinion if I were you! Is he an MS specialist??

Kx

No idea. I looked him up on the internet but couldn’t find anything. The one Beneden paid for was a ms specialist and his is the report that starts off with ‘a few non specific…’ feeling very stressed at the moment and also annoyed that he waited 3 months to the appointment to get some blood tests ordered. Thanks for your help.

[quote=“rizzo”]

You’re right - the two reports are completely different.

“2 foci of high signal changes adjacent to left frontal horn with morphology of demylenation” means two lesions next to the front of the left lateral ventricle, i.e. 2 periventricular lesions.

“a few non specific White matter changes not thought to be excessive for her age (42). It also showed a slightly larger focus of periventricular White matter abnormality adjacent to the corpus callosum and anterior body of the left lateral ventricle which is thought to be suggestive of demyelination in terms of its location but not morphology.” means a few spots in the white matter that could be due to a number of things and that might be age-related plus a larger lesion next to the left lateral ventricle that’s in the right place for demyelination but doesn’t look right for demyelination.

I have a few issues with the second report. First of all, and this is purely my (unqualified) opinion: age-related lesions are a bll*** excuse. Lesions are not normal. Yes, there are places in a brain where it is normal to have white spots, and yes, a fair number of older people (30% according to one of my sources) have white spots, but 42 is not old(!) and “age-related lesions” are not nothing, e.g. they may be caused by vascular problems. If you have lesions where another 42yo, asymptomatic woman would not, then they need to explain them! Second problem is the morphology bit. Demyelination typically causes nice, clean edged, oval lesions, but there are other types too. So, exactly how does this larger area not conform to demyelination? Could it be one of the less common types of lesion? It shouldn’t be there, so what is it?! Thirdly, why is there no mention of the two smaller periventricular lesions?

Btw, I should say that it is normal to have white bits at the tips of the ventricles - I don’t know if this was what you saw on your MRI? A radiologist wouldn’t make this mistake though, so you can safely assume that the first report is referring to definite lesions. Perhaps these weren’t visible on the second MRI though and that’s why they aren’t mentioned in the second report? It’s certainly possible.

Hth.

Karen x

[/quote] I was shocked to read this karen but glad I did. My first mri showed 5 lesions and the report said given my age then 43, and macdonalds criteria, it was suggestive of multiple schlerosis. Long story short, a very cold and rude neuro told me it was just wear and tear and also put it down to age. Ive been in limbo since andtold I prob have fibro and to go home and deal with it.

janxx

The GP said that the letters were exactly the same and they were in the same position. Im not sure what to think now. I guess I will find out at my next neurologist appointment in a year.

Hi Dextersmum,

 

I am not dx yet.....my tests came back clear...although I have not seen the MRI rresults, thats what I've been told in a letter. I too have to see my neuro in a year....I'm not happy either.

Maybe they want to see If there is a change when we next see the neuro? Who knows.

 

Good Luck and try not to worry,

Wendy.

Thanks. Hope you are ok with it as well.

[quote=“Dextersmum”] The GP said that the letters were exactly the same and they were in the same position. Im not sure what to think now. I guess I will find out at my next neurologist appointment in a year. [/quote] I’d hazard a guess that your GP knows as much about MRI and neurology as most GPs. If you get a copy of your scans you can have a look for yourself - I’ll help if poss. (The letters are not the same.) Kx

I’ve emailed the NHS consultant and quoted the relevant parts and asked him to confirm they are the same as I did not believe they were. I shall let you know if he responds or not. I rang PALS earlier and she said try my GP first and then get back to them. As my GP thinks they are the same I can’t get a second opinion.

How can I get a copy of my scans? One was done privately and one was with the NHS? The private consultant is the MS specialist, so if I could get my NHS ones and make sure they still have my old one on record that would be the quickest way.

Thank you.

You should have been given a copy of the private scan. If you weren't, just ring the hospital and ask for one on disc.

You can also get a copy of the NHS scan by ringing the scanning unit where you had it done. You will very probably have to pay an admin fee (~£20), but they have to give you a copy.

 

Do either of the letters say anything at all about the MRI results? If the GP is adamant, perhaps it says something somewhere else too?

 

Kx

That should have said "Do either of the letters say anything ELSE at all about the MRI results?" Doh!

Hi. They say nothing relevant. The nhs had my spine checked and that showed unrelated issues. I will see if the consultant responds and then chase up the scans. Thanks for your help.