Hi folks,
I just wanted to introduce myself.
I’m Alison, I’m 45, married with two kids. I was diagnosed with RRMS about a month ago, after about a year of MRI scans and neurology appointments.
I am very lucky in that one of my friends is an MS specialist neurologist in another part of the country, and she has been a great support to me and helping me get the most out of my appointments with my neurologist (who is also very good).
Because I had an active scan in August that was enough to diagnose me under the new guidelines, plus when I went through my updated / refined symptom list with my neurologist he could see clinical episodes. So the result is that I have been offered a highly effective DMT and have chosen Kesimpta.
I am in the process of getting all my vaccinations and hopefully will start Kesimpta in a month or so.
It’s been a lot to process and I have found it quite wearing to try and coordinate between the neurologist and neurology secretaries the GP practice as letters haven’t always got through etc. I’m really bloomin tired!
I rang the MS Society helpline this afternoon for the first time and the chap who answered was lovely and very kind when I was upset.
I’d like to connect with other people with MS and this forum and my local MS Society group seems a good way to do it, so hello (waves slightly nervously) 
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Welcome Alison @lnp8acr wishing you well on the DMD treatment Kesimpta. Hopefully it’ll keep you as free as possible for as long as possible without your ms progressing any worse than it is. It seems like the majority of new ms sufferers get offered DMD’s nowadays. Being someone who’s been diagnosed for over twenty years it wasn’t something I was offered and still haven’t been offered anything. Not that I’m complaining.. I’m just saying how it is..or how it was anyway. And I do consider myself fortunate compared to lots of people.. people who have ms that is.
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Hi Freshairman,
Thank you for saying hello 
I am sorry you haven’t been offered any medication. How is your MS? Have you had many relapses / much progression? I hope you are keeping well
Hi Alison, so sorry you’ve been going through all this but fab you reached out to the MS helpline and fantastic that you have such a clued up friend too! Must be a big help to have someone who can decode medical jargon but also understand a little bit about what you’re going through - my friends in the NHS were also super helpful during my diagnosis.
More than understandable that you’re feeling rough at the moment. Glad you’re reaching out to lots of others - this forum has been a massive help to me and hope you find some useful things here, too.
I can’t really complain about anything regarding my ms or it’s progression @lnp8acr I’m still walking, still driving. Yes, I’ve had relapses over the years since my first bout of optic neuritis back in 1993. Including optic neuritis twice more..on one occasion in both eyes simultaneously..that was quite frightening. And the usual pins & needles. Numbness. Falling over fairly regularly. Not being able to drive for several months due to mobility problems with my right leg. I’ve always recovered sufficiently enough though. Probably don’t walk quite as well nowadays but, still getting out and about.
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Hi Alison, I know everyone’s experience of MS is different but here is my history- life with RRMS- which I hope gives you cause for some optimism. In short I was diagnosed around 19 years ago and my symptoms now are that I have trouble walking for more than say 10minutes without rest ( use a small folding mobility scooter when out in town etc) but do my share of the house work , vacuuming etc and on a good day can spend 30 mins or so on this without rest. I experience bladder urgency which is a pain when going out - I always check where the nearest loos are! Get some constipation but manage that with diet and drinking enough. That’s about it so all in all not doing too badly after 19 years , 72 next year and on one of the very first and least effective DMTs ( Avonex).
The DMTs these days seem a lot more effective and as you might have seen there is hope of remyelination treatments coming down the line. These aren’t going to appear any time soon but it’s all very encouraging.
I also follow the general guidelines on diet, exercise and lowering / managing stress and anxiety through mindfulness /meditation ( my particular resource for all this is the website and book from Overcoming/ Living Well with MS ( created by an Australian Professor of Medicine who has MS).
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Hi Alison,
Welcome to the forum!
I was diagnosed at the same age as you and I’m also on Kesimpta. It’s been a great drug for me. It’s so convenient, no hanging around in hospitals - I did my first self-administered dose in the loos at Paris airport!
You are right, dealing with NHS admin is a real nuisance. We all tire of phonelines with their perpetual “experiencing a high volume of calls” etc. I went a bit mad around diagnosis time trying to deal with neurology secretaries who wouldn’t communicate with me (or GP). Once your treatment is up and running, things should calm down a bit. The monitoring requirements for Kesimpta (blood tests etc.) also get less regular as time goes on.
It’s useful to have the contact details of your MS nurse service if you can get that - phone, email, whatever they use. Sometimes they’re more responsive than consultants’ secretaries…
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It’s so lovely to receive so many kind welcomes, thank you
And thank you for sharing your stories. It’s really helpful to have other people to talk to on here that know something of what I am going through.
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Thank you Leonora, it’s really good to hear your experience.
In my trust I have an email for the MS nurse which is a shared email address and I can’t say I found them that responsive the only time I tried to get in touch, but I will persevere.
I have found the consultants secretaries quite helpful but it does take a while to get through.
I have heard from the kesimpta nurse finally but still haven’t heard from the drug company that supply it. The kesimpta nurse said she had a landline number for me, but that hasn’t been connected for years so the number on my record is clearly out of date. Another thing to try and sort out next week! 
I am hoping that, like you, it all settles down soon.
I think you are really brave giving yourself the kesimpta in the airport! I hope I get that confident with it.
Hi Hank_dogs, it sounds like you are doing really well I will look at the resource you mentioned for meditation and mindfulness, thank you.
I am often pretty anxious, but that comes with the territory of being autistic I think - the world is not set up for brains like mine!
I do my best to manage my worries but there’s always room for trying something new.
I will also investigate diet etc. I try to eat pretty well, but again, there’s room for improvement there too!