I was diagnosed with relapsing and remitting MS the start of first lockdown in 2020. I had my diagnosis (following an episode of optic neuritis which was in 2019) from my neurologist via video conference. Since then I have seen an MS nurse in September 2021 for a check in but as I’ve had no relapses (that I know of!) I haven’t heard from or seen anyone since.
As this is all so new to me, I just wanted clarification that this is quite typical?
Thanking you all in advance
Hello, I think it’s normal that you aren’t rushed to see consultants etc. I would say the key thing is the nurse appointments, if you can see the nurse every year then that’s good.
In my experience it takes a while for things to settle so if you haven’t had any relapses that’s a really good thing, long may it continue.
Are you in the UK?
COVID has put normal practice out of kilter in many areas.
Different centres take different approaches. Some go in with both feet starting treatment with Disease Modifying Therapies as soon as possible after diagnosis, others take a wait and see approach.
You should have contact details for your nurse and it is probably worth touching base with them to see what is happening.
They tend to be routinely driven by those of us on DMTs who need periodic checks and those who have relapses/deterioration/queries so it easy to get overlooked.
There are people who go many years before something else happens and indeed some where nothing happens again.
Your MS Nurse should be explaining this.
Also look at the MS Society and MS Trust websites to explain the wonderful diversity of the World of MS.