maureena 27/03/18
Last reply 3 weeks ago
Updated MacDonald criteria not being im

Had appointment with Neuro yesterday and discussed new updated Macdonald criteria for diagnosis and using positive lumbur puncture instead of dissemination in time. He said even though it was published after ectrims it is not presently being implemented here in UK. As theirs no changes in mri since cis he does not want to start dmt. monitoring continues yearly unless any new relapses and can contact him.

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stumbler
3 weeks ago

@maureena , frustratingly, your Neuro is right. There have been recommended changes to the McDonald Criteria, but NICE have yet to update their clinical guidance.

Unfortunately, we have proactive Neuros and conservative Neuros and yours obviously fits in the latter bracket.

It does make you wonder why these people get paid so much when they only do what they get told to do! Hippocrates must be spinning in his grave. 😉


maureena
3 weeks ago

I wonder if Nice will update their guidance anytime soon. I am pleased their are no new lesions but that’s the way I want it to remain. I guess I just need to trust my Neuro and his confidence that it’s not active disease and thinks , though no guarantees, that it’s ‘ mild ‘ course . He is arranging further mri so is keeping close eye to which i am grateful


soprano
3 weeks ago

Please be as proactive as you can. Mine laid dormant for four years then exploded into a beast that left me paralysed in a wheelchair for 6 weeks, amidst a string of consecutive sensory relapses. I’ve started tysabri and have mostly recovered from the relapses but I wish I had been more aggressive with my treatment strategy as this could likely have been avoided.


maureena
3 weeks ago

He has arranged another mri because of possible relapse . If new lesions are seen will start dmt if not wants to continue monitoring as no changes in mri since cis 3 yrs ago although symptoms and leg weakness persists.

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