Newly Diagnosed
Hi all! I’m new here and very overwhelmed by all the support and love everyone gives each other💙💜
I was diagnosed officially last week after being “suspected” for months, after LP, symptoms and CT indicated MS but the MRI took so long to get done.
The letter I received today post MRI, stated “rapidly evolving severe ms” which wasn’t communicated and worrying me a bit, I’ve had 4 relapses in 4 months and yet they seem to be dragging their heels on starting treatment.
My neuro said he wants it started ASAP and by the end of this month and that he’ll pass me to the MS nurse… but the letter I received today is for an appointment with her late September.
I’m just concerned at the speed of my relapses so far this this could result in further relapses and further irreversible damage being done 😞
Does anyone think I should accept this appointment or try and push for more?
I’m at a bit of a loss and so tired of chasing things! Thankyou 💜
Trust your gut and never settle until you’re happy
I think you should at least ask for a sooner appt or for a cancellation appt, perhaps speak to the neuro's secretary who might be able to help with this. You also need to factor in the time after your nurse appt as depending on which treatment you are offered there will usually be a wait for your first delivery (if one that you administer yourself) or for your first infusion. To give you an idea, my neuro said early July he wants me to change DMD, had MS nurse appt early August for screening etc and then contacted by drugs nurse (Kesimpta) to say she would arrange to visit me once first delivery arrives which she said would probably be early September.....