Friday, 12 May 2017

#ClinicSpeak: developing a personal relationship with your MRI scans

Have you seen your own MRI scans? #ClinicSpeak #MSBlog

MRI monitoring is becoming ubiquitous in the monitoring of MS disease activity. I would be interested to know if pwMS are being engaged with the monitoring of their own MRI scans. If yes, this may be one way of helping move from a 'passive' to a 'more active' form of monitoring MS disease activity. I am convinced that people with rheumatoid arthritis are more engaged with the management of their disease because the RA disease activity score contains a PROM (patient-related outcome measure). Providing pwMS with their own MRI metrics may help. Or you may disagree?

On standard MRI the following metrics are associated with poorer outcomes; it may be helpful in making decisions about you treatment if you knew about these.

  1. Number of T2 lesions (white or high signal lesions)
  2. Gd-enhancing lesions (actively inflammed lesions)
  3. Presence and number of posterior fossa lesions (brain stem and cerebellum)
  4. Presence and number of spinal cord lesions
  5. Presence of T1 lesions or black holes (swiss cheese lesions)
  6. Presence of obvious brain atrophy

20 comments:

  1. I actually asked to see my scans but was told I wouldn't understand them - I don't know how many lesions I have, just that the MS progressed and became active

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    1. That is unbelievably patronising and arrogant.

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    2. I have to agree with MouseDoctor2 here! If you don't understand them, it's up to your HCP to explain them. That's your health data and you have every right to see it, regardless of whether or not you understand it!?

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    3. the radiologists write the reports. we have copies of all my partner's reports. it's been really helpful.

      i've encountered neuros who read the scans themselves. neuro 1 saw 3 lesions, neuro 5 saw many and neuro 1 saw only 2....

      don't feel bad- if docs can't form the same opinion when looking at the same scans, what hope do you and i have?

      you can get copies of your reports through the freedom of information process - no matter which western country you're in. and if that process is a bit cumbersome, make some noise and report your doc's refusal to his/her superiors/administrators.

      There may also be some smaller patient advocacy groups in your area who might be able to assist.

      You have a right to obtain information about your health and copies of your own medical records. don't let dickheads fob you off cos they are too busy building their own egos to deal with the actual people in front of them.

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  2. No I haven't seen my scans and I don't know what could lay ahead for me, that discussion never took place and the most recent mri is 4 years old.


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  3. Please could you do a post on MRI scans - i.e. difference between T1/T2/enhancing scans and what this means?

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    1. http://multiple-sclerosis-research.blogspot.com/2015/01/education-whats-mri.html

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  4. I asked to see my MRI scan of my neck a few years ago. The registrar answered "it's just a snap shot in time" and didn't show me the scan. I wouldn't tolerate that response now.

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  5. Yes, have always seen scans (on all two occasions in 11 years). Spinal cord ones I can relate to, brain ones not so clear I don't really know what I'm looking at! The first set I'd paid for privately and still have the films in the bottom of my wardrobe. Second lot were NHS but for £20 I have a copy on disc. Radiologist reports mean a lot more to me, which I guess is why we have radiologists ;-)

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  6. I had a scan done at diagnosis in 1995 but it was never shown to me. I have had quite a few scans done when involved with medical trials but not allowed to see them, grrrrr.

    I would dearly like to see an MRI scan so I can really understand what this disease has done to me. I would need a kind and empathetic person explaining everything to me and possibly a G&T in my left hand.

    The real question is this - can I just ask for one and then receive an explanation or do the NHS financial constraints make this impossible. At the end of the day I am the customer and I would like to know a bit more about my condition.

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    1. I feel I need to start again from the beginning. An hour with someone willing to explain what it all means for me and the best way forward. I don't think the NHS has the resources, or the will, for that level of care though.

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    2. There's a useful video lecture on youtube by a neurologist. Called Multiple Sclerosis lecture-understanding your MRI. It's about 47 mins long and discusses different MS lesions and locations on MRI, plus the idea of NEDA.

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    3. please supply the link, i'll have a watch

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    4. Here's the link
      https://www.youtube.com/watch?v=6X2HA0895HU

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    5. I think it is;

      https://www.youtube.com/watch?v=6X2HA0895HU

      Thank you for that Anon, this is much easier to understand and absorb than reading about it.

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    6. There is also a good talk from the Cleveland Clinic: https://www.youtube.com/watch?v=xWFQ0eAGv24

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  7. To what extent is computerised determination and analysis of these possible?

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    1. Highly possible, it is is question of what is not seen.

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  8. Is the poorer outcome for posterior fossa and spinal cord lesions measured by the EDSS? I have these and whilst walking is not fabulous, my cognition seems sharp, I have no issues with vision, speech, vertigo etc. I realise that all this could be to come, but so much emphasis seems to be placed on walking...

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  9. I see all my exams, I read all the reports and as I am curious I will research about the results as well, and I still discuss them with my neuro. My neurologist knows this and does not think it is bad, she says that if possible the patient should know and try to understand about the progress of his pathology. Besides, I'm going to get the results of my exams in the laboratories

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