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No clear lesions but areas of hyperintensity

Hi guys,

hope pe you are all well!

just wondering if someone could help me decipher my latest MRI! I am waiting for my neurologist to find a second area of demyelination following transverse myelitis in March and lesions found in my brain and spine. I desperately want my diagnosis now so I can fully accept it - they have already put me on dmds.

Anyway, my latest MRI states no clear lesions on thoracic spine but some areas of hyperintensity. What does that mean???

is that enough to push them to finally diagnose me? Tina - if you are reading this - I would greatly appreciate your thoughts ( and of course anyone else kind enough to reply!

kx

Oh,

Hi Keira - I’ve only just seen I was cited by name in this one, so thanks for the trust and confidence, but I’m not sure I can clarify. :frowning:

Usually, “hyperintensities” are used fairly interchangeably with “lesions” - especially in someone who’s already had confirmed lesions in the past.

I would say that “hyperintensities” tend to correspond more to radiographer-speak, leaving it to the diagnostic expert (the neuro) to confirm what those hyperintensities actually mean in health terms, and whether they are demyleninating lesions, or something else.

It does seem unusual to expressly exclude lesions, but then say there were areas of hyperintensity.

Sorry, but all I’m really getting from this is that the results must have been ambiguous. They saw some kind of anomaly, but couldn’t say with high confidence that it was a lesion or lesions, even though that seems the obvious explanation, in someone who’s already had some.

I suppose now, it’s up to the interpretive skill of the neuro, and whether he’s satisfied these “hyperintensities” do, in fact, represent lesions, or whether he thinks it’s low confidence, and you still need to await more evidence.

Sorry.

I sometimes think it does more harm than good to send out these MRI reports before they’ve been through the interpretive lens of the neuro. I know it’s your right to know what’s being said about you and all that, but if nobody has translated it into plain English for you, what’s the point?

Tina

x

Thanks so much Tina. I really appreciate your reply and expertise! I too thought that hyperintensity is very interchangeable with " lesion". I guess my hyper intensities may have been too subtle for my neurologist to have classed them as a lesion (s)…

i called the secretary today to see if I could gain further clarification and she said my neurologist would call me tomorrow which I am very pleased about!

I know I can’t defy the constrictive definitions of the macdonald criteria but I find myself so desperate to have that all important diagnosis!!! After a horrible bout of transverse myelitis followed by obands in my csf and an almost instantaneous reaction to any kind of stress - that races like wildfire throughout my body - I need to see the words in print to finally accept that there is a medical and for what I have!!!

anyway, how are you? Is there anything that stresses/worries you? You are always replying to everyone’s worries but most need someone to lean on yourself. Your knowledge and replies on this forum are outstanding

kx

Hi Keira,

Almost afraid to ask, but a bit concerned we haven’t heard back from you about what happened.

Did you get the callback, and what did they say?

Tina

x

Hi Tina,

sorry for not updating earlier - have been working extra hours to try and keep up at work!!!

the neurologist said that the radiologist was rather vague with her language due to the fact that a certain set of angles hadn’t been used in the MRI. I’m sure she used the language axial or sagital - something along those lines. The wretched thing was I was looking after a friends small child at the same time as my own little one when she called - and the little devils were causing havoc while I was on the phone, so I stupidly didn’t ask her to explain it further. She seemed to think that even if they ad done the correct set of scans from the right “angle” or “sequence” - there wouldn’t have been any active inflammation:

So she now seems quite content to just let things take their course and if I have another relapse she will send me for another MRI. I expressed my concern that according to my research, lesions could form and then completely resolve in the space of weeks, so surely I should have a routine MRI at least every 6 weeks, but she didn’t seem keen on that!

When end I went to my dmd seminar run by the Nhs, the nurses referred to MS as an iceberg with 90% of damage firming by way of silent lesions with no outward display of disability. Because of this, I was keen to have routine MRIs so that the success of the dmds could be truly measured…

in a purely selfish light - I also have a critical illness policy that I can only claim on when I have my clinical diagnosis!! This would allow me to give up work - bliss! Had the most horrendous day in the office today - and the stress makes my body feel as though it is being flooded with fire! It’s an almost instantaneous reaction throughout my body - especially in my finger tips and upper arms. Do you experience reactions to stress like that?

thanks so much for asking after me

kxx

I read this and it rang so many bells that I had to reply. Long ago, when I had recently been dx, I had something similar: I had come out of a tense and difficult meeting and was feeling drained but fine and got back to my desk, when I had a surge of out-of-the-blue all-over MS-y tingling strangeness and became so light-headed with adrenaline that I had to sit down before I fell down - I was feeling perfectly calm in myself - it was as if some malign force had wrested the controls from my grasp and taken over my body. I remember wondering how I was going to manage at work if I was going to get the vapours every time I had an awkward morning! But I have to say that it never happened again that way - I had plenty of MS-related problems with doing my job, but not that one. So your alarming stress response now might not necessarily set the pattern for you either.

Alison

Alison - I’m so sorry! Just retreading this and my response to you weeks ago must not have gone through. So sorry! My wretched mobile phone must have swallowed it.

im so glad you have not had that kind of response again - it really is awful isn’t it. Amazing how quickly the body responds to stress - shows how powerful it is.

hope you are well

kxx