Hello - hoping for advice

My son was diagnosed with MS when he was 10yrs old. The first episode was diagnosed as ADEM but when he had a second episode four months later, the diagnosis was changed to MS. He fully recovered from both episodes and had no issues since and no medication. He is now a fit, healthy 18 yr old who is due to go to Uni next year.

He was transferred to adult neurology earlier this year and they requested an up to date MRI - his last one was 2016.

Unfortunately, the MRI showed new lesions - his MS is (or has been) active during the past 6 years but not severe enough to show physical symptoms. Have to say it has knocked us all as we thought he was ok.

He has now been given two options - start 6 monthly infusions or wait 12 months and have another MRI to see if any further changes and then make a decision. A massive decision to make for an 18 year old and I don’t know what to do to help him. Does anyone know of any support groups for young people with MS?

All the evidence suggests that the sooner you start treatment, the better the long term outcome, so not sure what’s to be gained by waiting a year.
This is from the professor of neurology at Barts.
"It is clear that pwMS who are treated with more effective DMTs first-line do so much better than those who are asked to wait (watchful waiting) or are escalated gradually up the DMT ladder (slow escalation).
Case study: does treating MS early improve survival? (substack.com)

Shift MS tends to have a younger membership and might be worth checking out.
Shift.ms | Forum, Community & Support For Those With MS


I agree with whammel. I’m sorry that your son and the people who love him have all this to deal with, but if his MS is active, he needs to get on top of it before it causes real harm to his health now and in the future.

1 Like