Hi
I was diagnosed in June 25 with very active relapsing remitting MS. I have seen a neurologist and he made his reccommations for DMTs back in October 25 and i am still waiting to get started. His reccommend treatment depends on my JC virus status and i had to call and ask them to test me… that was 3 weeks ago and im still waiting to hear back. I know that when i do hear back, that is only the start. I will need another MRI and an education appointment with an MS nurse before i even make a plan.
Does everyone experience this kind of timeline? I am just worried because they say its better to get started with treatment asap but its been 6 months and i am nowhere yet…
That sounds very frustrating for you. You’re right - you do need to keep chivvying things along and make sure that nothing has got stuck in the system because they can get stuck. (Nothing to do with MS but I was waiting for over a year for a minor surgery date to come through, only to find in the end that I had been lost in the system from the start and that (presumably) was why no one had ever got back to me despite all those message I left on various answering machines. So my suggestion would be keep calling them. You do need to advocate for yourself in this game and you shouldn’t feel embarrassed about doing so.
I am sorry about your diagnosis. If it’s natalizumab you might be starting, my own experience on that drug is very good. I’ve been on it many years and it has stopped my very active MS in its tracks.
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Hi Kate, that sounds really frustrating. I echo what Alison has said - keep chasing. It might be worth phoning the consultant’s secretary - you can usually get the phone number for the neurology secretaries on the hospital’s website. I have found them to be pretty helpful.
My timeline is a little different to yours - I was diagnosed in September 2025 and I am going to take Kesimpta. I am very lucky in that I have a friend who is an MS specialist neurologist in another area of the country so was able to talk through Treatment options with her, so I had an idea of what I wanted when my neurologist asked me. I think that saved some time and extra appointments with the MS nurse to discuss treatment options because I’d already thought about it.
But then there is a long process to go through for the treatment to be approved and arranged and funding for it approved, which takes 6-8 weeks. Meantime you can be getting your vaccinations through your GP (your consultant should write to your GP to ask him / her to give you them). Then your body need to have 2-4 weeks to respond to the vaccine before you can start immunosuppressants.
My Kesimpta was delivered to my house at the end of November. The Kesimpta nurse is going to come and show me what to do with it on 16/12/25. She would have come a bit sooner but I have had flu and am recovering from that.
It’s stressful though, isn’t it? All this waiting around, when our nervous systems could be going haywire. I have found it difficult but have just tried to resign myself to it.
It’s getting a bit easier.
I wish you well with working out and starting treatments - keep us posted 
Alison
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Hi Kate
Sorry to hear you’re still waiting for a response. I had a relapse end of June, and even though I already knew what it was, I was told I’d see a neurologist within 2 weeks after I got discharged. After chasing by email and phone, I got my appointment booked for mid-September! I didn’t want to wait 2 more months so I went to the same neurologist privately in August. (Not that my private insurance accepted my claim.., never mind). Long story short, I had to keep calling and emailing MS Team to chase about a neurologist and MS Nurse appointments and eventually had them booked. I think I was somehow dropped off the list and even the neurologist was surprised he’d not seen me sooner..and also surprised I hadn’t been diagnosed sooner. 
So I’d recommend chasing by email or phone if you have contacts. I’ve learnt that it’s sometimes necessary in our situation.
Also great advice from Alison - if you can get your flu, covid jabs etc. done now, you won’t have to wait another 4-6 weeks on top. I had a flu jab in October, then realised I need covid jab too, and had to wait extra weeks. Only just about to start my dmt.
All the best, don’t lose hope and if you can, do chase them and ask for next steps. 
Let us know how you get on.
Paulina
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Hi @kate.cooper87 I am sorry to hear that you are having to chase all this. I have been in the same position for another thing I have within the NHS and was told sometimes people get lost within the system hmmmm.
A bit of advice before your MS education lesson, look up everything you can on Tysybri and also the other top treatments in case you end up JC virus positive ( I was positive so lost that option as I was also on another immunosuppressant and the risk was to high). If you are very informed before that MS nurse appointment, the chances are they will let you decide on the day, like they did with me and things were put into process quickly from then.
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Thank you everone for your replies. Good to know that it is not just me. It sounds like I need to be more proactive in chasing this and i will be.
Good tip to get the vaccines now. I will start with that!
Thanks again
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