Hi there
I received my diagnosis 3 weeks ago after a terrible episode earlier this year. The neurologist told me that I am suitable for high efficacy treatment and recommended the monthly injections at home. He told me that treatment would start within 4-6 weeks. I have just received a letter to attend an appointment with a MS nurse but this isnt for another 6 weeks. I am concerned about how long the wait will be following this appointment before I actually get started on treatment (I have read that it can be another 6-10 weeks!). I would be so grateful to hear about your experience with wait times and how to cope during this time of limbo. I feel very alone and very vulnerable to a further relapse without treatment.
That must feel very frustrating - you’re ready to go but your weaponry is stuck in the wilderness. I remember that feeling of just wanting to get going and it can’t come round fast enough. It is something that many of us will recognise. I’m not sure there’s much to be done beyond making clear that you’ll drop everything for to make a cancellation appointment, would be happy with a phone call instead of a face to face if that would speed things up and just generally let them know that you want to get on with it. I hope that you do not need to wait for too long.
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Hi,
I can understand your wanting to get a move on, but I think your timeline so far has been pretty good compared to the NHS average…
It took me 2 years to get diagnosed, then there was about 2 months of negotiating over treatment. I was told it would take 12 weeks to start treatment - it was more like 14 until the first injection (also kesimpta, which sounds like what you’ve been offered). Like you, I was desperate to start.
Before you start you may need to do various things e.g make sure that vaccines are up to date. So if you are offered flu/covid jabs, get those done as soon as you can. Your MS nurse will tell you what else you need. If you are flexible to go wherever is quicker, i.e. GP or hospital, that might also help - just follow up on everything. And tell the MS nurse if you are able to take an appointment at short notice, in case of cancellation…
Other than that, you can only keep busy and try to distract yourself. You’re doing everything you can.
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Hey,
I really understand how you feel 
I was diagnosed in May and didn’t start my Kesimpta until August. I had 2 calls with my MS nurse before starting, so it can take a while.
Try to rest, track symptoms, and lean on friends/family — you’re not alone!
— Sophie
Don’t know where you read that treatment starts6-10 weeks after seeing an MS Nurse? I wouldn’t assume that - it could well be that the MS Nurse appointment is to show you how to inject. Personally I doubt if their is much truth in the idea that medication starts 6- 10 weeks after seeing an MS Nurse. That might have been the case with a few people but so far as I know that’s not a norm - the key date is when you saw the neurologist and got the diagnosis. I can’t remember exactly what happened in my case ( some 19 years ago) but the agonising wait was to see a neurologist and get a diagnosis after my MRI and I think things moved fairly quickly after that.
Also please try not to worry . mS is scary but it’s not like infectious or other medical conditions where the disease will progress rapidly with out treatment ( you have probably had the beginnings of MS for months and months ,possibly years).
I got my Ocrevus about 4 weeks after seeing MS nurse and making my decision however I didn’t need any additional vaccines. I was told if I went for the Ocrevus infusion or Kempsita it would have been a slightly longer wait but because I chose the Ocrevus by injection and it was a bit quicker to be scheduled in.