Last reply 4 months 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
8 months 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
8 months 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
8 months 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
8 months 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.


maureena
5 months ago

No new lesions on mri so remains cis. So unless major relapse or new lesion then no diagnosus or treatment I believe in time I will be diagnosed but prob then be at progressive stage going by my age.


maureena
4 months ago

Reply I received recently from ms society about 2017 criteria:

You’re right, the NICE guidelines haven’t been updated yet, but neurologists should be using the 2017 criteria when prescribing treatment at least.

There’s a new treatment algorithm that neurologists in England are using to prescribe disease-modifying therapies. The final version hasn’t been published yet, but you can read a draft version here: https://bit.ly/2FyX76b. The draft version references the 2010 criteria, but our Policy Team has said this has been updated in the final version. Although the final version hasn’t been published yet, neurologists are supposed to be using it.

It’s a complex situation and it sounds like you’re stuck in limbo. PALS may be able to help if you feel your not getting treatment you should be.

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