My 21 year old son was diagnosed with RRMS in November last year following over two and a half years of tests. His first bout of optic neuritis came 2 months after his 18th birthday so it’s been a case of waiting and then trying to get an appointment to see the neurologist whenever something flared up - have to say it has been a hard slog and I have had to chase lost referrals and fight for an appointment and found we had no support at all to the fact that my son doesn’t really acknowledge the fact he has this condition unless he has a relapse.
I feel very isolated because he does not talk to anyone about it, he is at university and none of his flatmates know, none of his friends know - it’s only the disability service and his tutors who are aware of his condition. At home, only his immediate family know too as he does not want people to feel sorry for him or treat him any different - my husband doesn’t like to talk about it either, so i just have to get on with it and sort of pretend it’s not happening - but I can’t as I’m his mum and he is due to start Tecfidera very soon and I don’t think he realises how this will effect him.
I see most of the people on the carers forums have parents or spouses who have MS but there doesn’t seem to be many parents who post - I am fine but I really could do with someone to talk to who understands from a parents point of view.
I have to say, since he moved to university in September and we transferred his care just before Christmas it is amazing the support he has from the Neurology team there and how quick they get things done!
Anyway, have had my little rant - feeling better now, would love to hear from anyone who would like to chat