@Cookie91

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Cookie91

MRI scans

Hi all! Out of curiosity, how often are people having MRI scans?

Stumbler

@Stumbler

@cookie91 , this is taken from the NICE guidelines :- https://www.nice.org.uk/guidance/CG186/chapter/1-Recommendations#comprehensive-review Dependant on your MS activity, an annual MRI would seem to be required to assist with this "comprehensive review"..........

Cookie91

@Cookie91

@stumbler , thank you!

Jennifer_Hopson

@Jennifer_Hopson

Mine are usually 12-18 months. But I imagine that varies from case to case.

Happy_Wanderer

@Happy_Wanderer

Before I was diagnosed, I had 5 in the space of 2 years (basically every time I thought I was having a relapse or a “new” symptom). Since diagnosis and being put on DMs, it’s one a year

Cookie91

@Cookie91

Thank you for your responses! I’ve just had an MRI based on my first real big relapse in six years. It appears I must be asymptomatic as MRI showed a number of new lesions yet I appear clinically pretty well minus a few symptoms. I just wondered whether it was normal to go so long between scans. I have been on two different types of medication in those six years too!

Stumbler

@Stumbler

@cookie91 , it's more than possible to accumulate damage to your Central Nervous System (CNS) without you noticing definitive symptoms. If you've recently had a big relapse, this might be an accumulation of these new lesions. But, it does suggest that your Gilenya may need to be reviewed. It all depends on when you started the Gilenya, relative to the date of your last MRI. This just goes to show the benefit of more regular MRI scans, to review the efficacy of your Disease Modifying Therapy (DMT). Isn't hindsight a worthless attribute? 😉

Cookie91

@Cookie91

@stumbler , you’re not wrong about hindsight! Certainly doesn’t help me in this situation. I’ve been on Gilenya for a few years. Stopped taking it at the beginning of the year with a view to family planning. I had read that a lot of people go down hill after stopping so I was prepared to some extent. Family planning firmly on hold, I have been advised to look into Cladribine, although as the neuro said... it’s all a bit like closing the stable door now!

DominicS

@DominicS

Assuming a person is stable then annually as a minimum in the UK.

Mlgilber1

@Mlgilber1

Mine so far have been every 3 to 5 months, but mine started very active.

Stumbler

@Stumbler

@cookie91 , unfortunately, "Gilenya Rebound", as you know, is a risk. But, you should never give up on your family planning aspirations. The following is the Patient Information Leaflet for Mavenclad (Cladribine) https://www.medicines.org.uk/emc/files/pil.8435.pdf This suggests that it is a family planning friendly treatment, subject to fairly precise scheduling. I can see your Neuro's point about the stable doors, but you haven't lost all your horses. So, surely shutting the stable doors now is a worthwhile exercise. 😉

Cookie91

@Cookie91

@stumbler , I am big believer in a positive mental attitude. I will continue my battle for as long as I am able! My neuro seems to think that they are really going to like Mavenclad once they have some more data to back it up. Fingers crossed for us all 😊

potter

@potter

I had one when I was diagnosed which was 11 years ago and one last January. I have to pay for MRI's with my insurance plan, I have had only one mild relapse since I was diagnosed. I have been on DMT's since I was diagnosed, my recent MRI shows minimal progression in my MS since my first MRI. I couldn't see spending 1800 dollars just for the doctor to check it out. It would have been different if I was having relapses all of the time. Potter

PeterFrancis

@PeterFrancis

I've had 2, one at the time of diagnosis and the second a few months later with contrast. I was diagnosed with SPMS in the Autumn of 2017.

Cookie91

@Cookie91

@potter , glad to hear your MRI shows minimal progression. I hadn’t been having relapses over the six years since my diagnosis but unfortunately my last MRI showed a number of new lesions

Lightning87

@Lightning87

My last NHS one was March 2018. I took part in a MS study in Sept 2018 and got a MRI as part of this. When I went to see my MS nurse last month he said as there weren’t any changes they would wait until my second study MRI a year later ie Sept this year. I’d have thought the study should be separate to NHS MRIs but they seemed to think as my last MRI was stable there was no rush to do another one. I would like one as I’ve been experiencing new tingling since Nov 18 but suppose I’ll just need to sit and wait until later this year!