Hi all. Thought I’d introduce myself as it’s really helped the last few weeks reading other people’s stories.
My story is that I lost sight in my left eye in September 2025 and was referred to ophthalmology. I had a follow up appointment a couple of weeks later after almost a full recovery of my eye and was told by the ophthalmologist he’d refer me for an MRI as it’s likely I had MS. My MRI wait time was around 8 weeks. In October 2025 I had another bad flare up of optic neuritis and the MRI was brought forward. I had over 20 lesions on my brain in 3 different areas but told I couldn’t see a neurologist for diagnosis or next steps until January 2026. In the meantime I was beginning to experience severe fatigue, and lots of numbness and cramping in my legs. I paid for a private neurologist appointment and got my MS diagnosis (RRMS) this Monday.
I’m currently managing my symptoms the best I can at home until I have my NHS appointment and can start to discuss next steps and treatment.
overall I’ve been quite positive but the waiting for treatment is tough. If anyone has any tips on managing symptoms whilst in limbo that would be great. I’ve been taking magnesium and vitamin D supplements but not sure what else I can do.
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Hi and welcome @laurenmorgan1796 the waiting is something we all have to endure at times. Frustrating..if we let it. Just take each day as it comes. Enjoy each day. Your symptoms will still be there, whatever you do. Be kind to yourself. Your body will be sure to let you know if you’re overdoing it. They’d probably be the supplements I would say to take. I only take the vitamin D3 one although I do take another one.. vitamin K2. Wishing you all the best, on your ms journey.
Hi,
Sorry to hear about the diagnosis - but you’ve taken very positive steps to get there.
In terms of symptom management, you can still always see your GP. I was put on amitriptyline for pain relief before any diagnosis, let alone DMT decision.
If you can still manage to get exercise while waiting, that’s a plus. I know not everyone finds that easy.
The other thing that I found helpful generally at this stage was to read up on MS research. Research seems to be incremental (no “miracle cures”), but I did find it helpful to think that so many options were being explored. It also helped to guide my choices on DMTs, when the time came.
Hi there,
I’m recently diagnosed too (RRMS), and awaiting treatment to start.
The process for treatment starting can take some time.
In my area the MS nurse helps to explain the options available to you. I knew what I wanted so was able to tell the neurologist quickly. (I have a friend who is an MS specialist neurologist in another area of the country so she talked me through the options beforehand.) The drug I chose is Kesimpta. The drugs you will be offered will depend on your clinical presentation.
Then in my area the neurologist has to discuss my case at the multidisciplinary team meeting, and the approval for treatment (or not - it depends on the guidelines for who is eligible for what treatment) happens there.
You have to have a set of blood tests done to make sure they are ok and you are healthy enough to have that treatment.
Then because Kesimpta is so expensive, it has to receive funding approval through another process.
Then the neurologist writes to the GP to ask the GP to give you vaccines before you start the Kesimpta (for me it was COVID, flu, shingles and pneumonia, I think that’s pretty standard), and you have to get that done.
Then there’s some more processing to do with the prescription actually being issued and checked and sent to (in my area) the home care team. Then they contact the drug supplier to tell them to contact you to arrange to deliver it to your house. Then the Kesimpta nurse has to contact you to arrange to come to your house to show you how to inject it.
Then FINALLY you start treatment! I’m not there yet, but hopefully it will be soon.
I don’t know if that’s helpful - I wrote it to try and give you an idea of what might happen and how long it might take. I imagine some of the drugs are cheaper and that probably makes it easier / less steps to follow.
I wish you well in your journey. Distracting yourself can help while the NHS machine does its thing.
X
Oh that’s dreadful about the wait - I am so sorry. Obviously it’s not good news that it’s MS, but if it is then you want to crack on with a treatment plan, particularly as your MS is sounding a bit active. If I were you I would email the NHS consultant’s secretary (presumably the same one who you saw privately?) and explain the situation and make clear that if there’s a cancellation you will drop everything to be there. Apart from anything else, you’ll want to check that the referral really is in the system. I’ve got caught out with that with another ailment - you assume that the appointment/referral system is working, but it doesn’t always.
I am sorry that you are having such a worrying time.