So I’m back with an update much quicker than I’d anticipated, I had a phone call from my neuro today my LP results are back and they confirm that I do have MS.
I’m now on the waitlist for a pre-treatment assessment at the hospital and then I’ll pick a treatment to start.
At the moment it feels almost anti-climatic but I’m sure I’ll have a fair few emotions to go through over the coming weeks as I start to process it fully 
x
Thanks for taking the time to reply, it’s such a minefield to navigate diagnosis isn’t it?
Have you had any updates on your treatment yet? 
Hi there,
I’m sorry to hear you’ve had the diagnosis of MS, though at least you know for sure I suppose, and can access some treatment. How are you feeling about it?
It’s a bit of a rollercoaster for a lot of people I think, myself included.
I am due to start Kesimpta shortly. It is going to be delivered to my house next Thursday (27th Nov). I am trying to get hold of the Kesimpta nurse to arrange for her to come and show me how to inject it. She’s not returned my messages as yet so I’m guessing she might be on leave or something. The waiting is frustrating!
Have you had any thoughts about treatment or know which ones you are eligible for?
Just a heads up that it can take some time from deciding which one to go for, to actually starting. The process is quite lengthy and involves you having blood tests and vaccines, plus the process of the neurologist issuing the prescription, and it being checked and sent to the home care team, and the funding approval being sorted out too.
It’s taken about 6-7 weeks for me.
Keep us posted with how you get on
Hey Inp8acr, thanks for the reply! I’m hoping by now you’ve been able to get started with Kesimpta - how is it going?
You’re right it’s taking a while to get things going treatment wise, I’ve got a pre-treatment assessment next week where I’ll pick between Kesimpta and Ocrevus and I assume that will trigger the weeks of getting it approved/prescribed etc at that point?
It’s quite frustrating having to wait for news, especially as it’s been the festive season which slows everything down at the best of times 
x
Hi there,
Sounds like it won’t be too long until things are in progress for you treatment-wise, that’s good. I found the waiting very frustrating and dysregulating.
I started on Kesimpta mid December (I had flu at the end of November and couldn’t start the drugs until better from that). I’ve had the three loading doses and it’s been ok. I think i definitely chose the right medication for me.
Keep us posted with one you get on with your next appointment
Alison
Hi all, it’s been a while!
Since my appt on 10th Jan where I opted for Kesimpta - I’ve had all my blood tests done, had a brain MRI to support the AMITABH study that the university are doing down here (and will have another 6 months into treatment), been set up with Pharmaxo and had my medication delivered last Thursday.
I’m choosing not to start until 2nd March as we’re about to go away on holiday and I wanted to have a clear run of no activities for the first month or so as I’m not sure how I’ll feel.
I’m super happy with how quickly everything has moved this side Christmas, I’ve also seen my ms nurse this month too for a regular catch up. I think the reality of MS is starting to hit home a little more now but I’m trying not to let myself get overwhelmed by it all 
Hope you’re all keeping as well as can be with your journeys too.
Sounds like things are going well for you @allywebbo
It’s Pharmaxo that deliver my Kesimpta too. I made a joke with the chap that delivered my last lot about ‘that’s my drugs delivered’ and he said it made him sound like a drug dealer and we had a laugh about that
I hope that your first few doses go ok. I found that I felt tired and a bit poorly after the first one, but not half as bad as some of the other experiences I’d read about. Hopefully it will be ok for you too. Make sure you’re stocked with paracetamol and don’t go to work that day in case. The next few doses just made me a bit tired and have heavy legs, but I take it in the evening and go to bed early and fine the next day.
I hope you have a good holiday this month! Where are you off too?
Go gently
Alison
I am so incredibly sorry you’re going through this, especially with everything else you are already managing. It’s completely understandable that you’re in shock and feeling overwhelmed right now. Fatigue is one of the hardest symptoms to explain to others, but please know you aren’t alone here. Since you mentioned not having local groups, this forum is a great place to lean on for support. For now, try to focus just on one day at a time and be as kind to yourself as possible while you process the news.