Last reply 1 month ago
Radiological/clinically isolated syndrom

Hi there
I’m from Australia, moved to the UK in 2018.
In 2009, following a bout of extended vertigo (originally suspected to be labrynthitis) an MRI found a number of MS like lesions. Neurological examination was normal, and a follow up MRI several months later found no changes. Neurologist recommended leaving it and seeking treatment if I experienced neurological symptoms in future.
In 2016, following back pain accompanied by some numbness and tingling, a further brain MRI showed further lesions. Initial MS diagnosis. A second opinion and normal evoked potentials resulted in a decision to monitor and not treat. 12 months later, the same neurologist recommended commencing treatment on Gilenya despite no further MRI changes, but as I was moving to the UK we decided to transfer my care to a neurologist in London.
The specialist in London felt monitoring was sufficient. My most recent scan showed a new lesion, but he still believes the AEs of DMTs outweigh the potential benefits.
Has anyone had a similar experience? I’m obviously very grateful to be symptom free (all symptoms have been generic and explainable by other causes), but I’m nervous about the risk of future relapses/progression, and confused about the differing advice in different countries.
Thanks in advance for advice.

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stumbler
1 month ago

@bronwyn_garrett , this one is so difficult to answer, as there is no correct answer.

The future is unknown and unpredictable, as is MS. Your MS could be referred to as Benign MS and could cause you no further issues. So adopting a powerful treatment may be considered pointless.

But, your MS could become active at some stage in the future, leaving you ruing the day you decided to not have any treatment. But, you could then adopt a treatment from that point forward.

Like I say, there is no right answer. To a certain extent you have to go with your gut, in the knowledge that you can change your mind at a later date. Just don’t have any regrets on what you decide now.

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