@Clary

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Clary

MRI

Hi everyone, I think I have asked this before (poor memory). Once I have been diagnosed how often should I receive a MRI on the NHS? Just wondering because if there are changes then I guess treatment will be altered. I am just wondering how long I may have to wait. Is it yearly or only if there is new symptoms? I kinda of thought that disease burden can accumulate silently, without symptoms. Thank you for being there. This site has been super helpful.

Stumbler

@Stumbler

@Clary , the NICE guidelines are a wee bit subjective on this particular point. But, they do propose a "comprehensive" review annually. There is a good argument to include an MRI in this review :- https://www.nice.org.uk/guidance/cg186/chapter/Recommendations#comprehensive-review

Clary

@Clary

Thank you 😊

Adriftinthewood

@Adriftinthewood

I used to have an annual one, more because my consultant was intrigued about how I coped without medication rather than there being a need. That said I fell out with them following a snooty letter I got as I had to change an appointment due to work (I was away for a week) and had to cancel.

Clary

@Clary

Interesting πŸ€”. Hi @Adriftinthewood are you still not taking medication and how is that going? I have just been offered Avonex (which I am disappointed with). I feel I ought to take it or I won’t get offered better ones in the future. I think my neurologist is old school. πŸ€·β€β™€οΈ I am trying to do the right thing for my future but no one can predict that. MS is difficult to predict. I guess everyone is different. Really hard to know what to do. I would love to hear your experience. Thanks πŸ™

Stumbler

@Stumbler

@Clary , it shouldn't have to be a case of doing what you're told. Your Neuro can suggest a treatment, but it's your body that it's going into. Avonex is one of the original MS treatments. There are now better and more effective treatments available. Most do not require you to push regular injections into yourself. Research what's available, then make a reasonable argument for your choice. It's better to be an active participant in discussions about YOUR treatment.

Clary

@Clary

Thank you @stumbler. I do agree with you. I think my neurologist offered me Avonex because originally he thought it was a CIS. After a second MRI there is clearly more lesions in my brain and on my cervical spine. Unfortunately I haven’t heard from my neurologist only my MS nurse. I wonder if they out of sync. πŸ€·β€β™€οΈ

Stumbler

@Stumbler

@Clary , you may be right. Give your MS Nurse a call to let them know you have concerns so they can postpone any plans for Avonex until you can review the plan.

Clary

@Clary

Thank you @stumbler this is very helpful advice. Good to talk to you. πŸ‘

802strong

@802strong

My nuero did another MRI at the start of treatment, with an annual scheduled for review. He said this will be ongoing but might extend to 18-18 month scans if there is little progression after a few years

Clary

@Clary

Thank you @802strong. I guess if the MS is less active and less lesions it means less MRIs. Which is good news and means your treatment is working. Good news. πŸ‘

Vixen

@Vixen

Hi @clary, don't forget to add n that Covid has had an impact on all out-patient appointments. This may well cause a backlog in itself....

Clary

@Clary

Thanks @vixen. Yes the covid factor will probably be with us for along time. πŸ‘Ž