My partner was diagnosed with MS early this year and up until a few weeks ago has been dealing with it amazingly but unfortunately looks to have had a relapse. We are still waiting to start her treatment (had a few tests to be given the green light), just wondered from peoples experience how long it took to get started from diagnosis? Can’t help but feel if she had started quicker she wouldn’t be experiencing what she’s going through now!
I was confirmed ms just before christmas.
Ms nurse sent me details of the 7 treatments i could go on.
Went to meet the ms nurse last Friday.
Thought i would be starting the treatment then.
Already told them which DMT.
But no now got to wait for the DMT to be posted to me.
Then wait for the nurse to come out the train me how to inject.
So for me still soundind like months away.
Hope it is quicker for your partner.
Yours seems to be quicker than mine so fingers crossed they get it out to you & training asap
Diagnosed just before Christmas too, I know what treatment I am eligible for and want but had another relapse while I was waiting for appointment to discuss treatment and now I have to have another MRI before that appointment because of the relapse
Just want to get on with it at this point
The medics “knew” what was going on with me last august and the formal diagnosis took a long while - and I’m home today waiting for my first delivery.
It’s not exactly been a speedy process!
I’ve also found the experience frustratingly slow. There is evidence that delay to treatment causes worse progression of MS, but my local service either doesn’t care or can’t cope. Every stage is slow, with no real evidence of an attempt to get on with it.
I had my first symptoms in 2020. My diagnosis appointment has been delayed to wait for another MRI scan - but that can take 8 weeks to process. I’ve also been told that the standard waiting time for an MS neurologist appointment is 4 months, and the time to treatment is then about 1 month after appointment. These are averages. I’ve found that it can take weeks just for a referral to an MS service to be “made” so that you join the official queue for an appointment.
For what it’s worth, I think all of us should point out that as patients, we are fully aware that DMTs should be started as soon as possible, and that if we deteriorate due to late treatment, that is an NHS failure. Just like delayed cancer treatment fails patients. It’s time they treated MS with the urgency they do cancer.
Thanks for the replies. Thankfully she’s managed to get a date of next week when the tablets are turning up. Fingers crossed you both start on your treatment ASAP as well.
Don’t know me but happy to have a chat about experiences so far if it’s ever needed.