hello! 32, new diagnosed! feeling a little dazed. what's the next steps?

Welcome and introductions
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hey folks, I hope you’re good and keeping warm and well.

I’m 32, keen reader and writer, traveller, hiker, culture person, love to cook, live life to the full… I try to live fully and well and have enjoyed, until last december, a full and active life.

was diagnosed with RRMS in december and still feeling pretty dazed. had experienced what I now understand to be a first attack/relapse 16 months ago. feel so many conflicting things, like confused and frightened and reassured: I still feel pretty well and pretty fit, but unsure how quickly this could change. it’s so hard to know what to feel about it all. have experienced an array of symptoms, some unpleasant and some less so, and they seem to come and go…

I should be seeing a neurologist soon to get the ball rolling on treatment. for the more seasoned, what should the newly diagnosed do? the most important things I need to be doing or looking into? there’s so much online, and that is encouraging, but it feels a little daunting at times and it’s hard to know what are the things I really need to be doing right now. are there any threads or forums here you feel are particularly worth looking through? I look online and it always feels like I’m not digging into this as thoroughly as I should - I suppose I’m still in that slightly dazed moment…

one good thing - one of my favourite writers, joan didion, was diagnosed with MS in her thirties, and went onto write some brilliant books. this is here piece about it

anything you could share would be gladly appreciated. wishing you all every health and happiness

best

james

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Hi @jamesdjgale Sorry to hear of your recent diagnosis and having to join the MS club!

Practically, look at the websites like MS Society (actual web page, not just forum) they have information for newly diagnosed, the MS trust have info on treatments, have a read up on all, your Neurologist will suggest some but read up first so you are prepared.

Biggest thing I found is to have a “use it or lose it” attitude, exercise as much and what you body allows. I noticed you like hiking, keep this up if you are able. I love walking and continue to do so daily, I do use a FES for drop foot that happens after a certain time, but still push it as far as I can.

If you are working, a little reminder that MS is covered under the disability act does no harm, that should help with any adjustments you might need now or in the future, and stop difficulties with time off for appointments.

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thank you @Cavworld for the warm welcome, and thanks again for this fantastic advice! I was not aware of these, and it’s a great place to start

I’m particularly encouraged by your use it or lose it tip.. if that is the case, I’ll be more than happy to do the former…

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Hi James. It’s no wonder that you feel a bit dazed mate. I’m not even out of the blocks yet (still being investigated) and I kind of know how you feel after something comes along and puts your brakes on like this.

I suppose all you can really do for the moment is take care of yourself as best you can while the clock ticks by towards your next point.

It seems to help me to try to keep doing some of the old normal things - I still pop out even if it’s just for a short walk and, I still enjoy cooking now and then.

I find that gaining a little knowledge on this whole thing by reading up on it makes it seem a bit easier to handle sometimes.

All the best :+1:

Jon.

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My goodness, thank you for the link to the Joan Didion piece - that was such a good read and I smiled wryly and in recognition at many aspects of it. Thank you. Well yes, she’s nailed it, really. Or at least I don’t think you’ll find a better account of what her version of MS feels like. Yours will be different in many ways as is mine, and of course our lives are different too, but MS means that we have something important in common. We’re all in the club that no one wants to join, and there’s a lot that another person with MS will understand automatically that you would have to explain carefully to a civilian and even then they might not get it.

I am sorry about your diagnosis, and hope that you soon have a treatment plan in place. That can be very good for morale in my experience.

I’m going to link to something about nutrition that I find helpful myself and that I was reminded of in the Didion piece. I do think she is right about the importance of looking after the lifestyle things, although she is equally right to say that you can do the right thing all day long and still be unlucky and vice versa. Anyway, here it is. Which is the best MS diet?

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Hi James from a long ago diagnosed with RRMS 71 year old guy and ex hill walker

It took me the best part of a year to get over that ‘dazed and lost feeling’. People talk of ‘grieving for their lost imagined future’.

What to do? I too spent a fair amount of time learning about this ‘frightening, scary unknown ‘ which did help so carry on reading/ learning from places like the MS Society and MS Trust’s websites. If you want some of the latest information and developments then look up Professor Gavin Giovanonni.

Also read up on the range of Disease Modifying Treatments of which there is an increasing number ( in my day there were just 3 or 4 and they were a lot less effective than the more recent ones). At some point your neurologist will probably suggest a short list of several for you to consider. They each carry pros and cons so a quick read now of the various types should give you an overall picture / understanding. You will also get an MS Nurse who will become your main point of contact.

Before meeting your Neurologist it’s a good idea to write down any questions etc that you might have and also write down the answers. I think we all find that the first meeting can be a little unnerving and can end up not remembering what we were told. You could take someone with you as well.

Something that helped me in those early days was a book ( and now website) ‘Overcoming MS’ written by an Australian Professor of medicine who has MS . The main suggestions are on diet, exercise and using Mindfulness/ meditation to keep mind and body calm ( stress is not good for those with MS - over stimulates the immune systems). If nothing else that book/website has helped me feel that there are things I can do other than use my Treatment.

It’s hard/impossible to know how quickly things could change. In my case I was diagnosed after an episode of Optic Neuritis and an MRI that showed ‘quite a few ‘ lesions in my brain. The optic neuritis died down and my eye sight returned slowly . I then had no symptoms for 8 or so years until I began to experience problems with my right leg - problems walking.

Unless and until you experience things that stop you , I would carry on walking and cooking healthy foods ( a good guide is ‘ what’s good for the heart is good for the brain’ and conversely ‘what’s bad for the heart is bad for etc ‘.

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thank you for your kind words jon - it’s good advice. I’ve been trying to live as normally as possible and, thus far, it seems to be working OK. but the uncertainty is not fun to live with

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thank you for this alison - the didion piece is brilliant, isn’t it? right now my MS would seem to be quite similar to hers, and as she’s one of my favourite writers, it’s a particular comfort.

I will start treatment soon and I’m doing everything within my limits to live well, good diet and so on, equally aware of the reality of it all. at the mercy of the fates… but thank you for the link, I’ll give it a read

I hope you’re keeping well

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thank you so much for all this - it’s both heartening and helpful. as long as I can carry on walking and cooking healthy meals, I will enjoy doing so.

the professor and overcoming ms are good pointers - cheers for these first places to start. meditation is a great suggestion, and it hadn’t occurred. it’s comforting to know others have been where you are which, as you say, is like looking at a future you never expected

thanks again for all this - it’s much appreciated. I hope you’re keeping well

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Yes, thank you, very well. My MS has rather a lot to say for itself, but one of the highly effective treatments finally got it under control and has kept the lid on it for 15 years so far. So yes, I am doing very well.

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I’m very glad to hear it - long may it continue.

do you mind me asking which treatment? or at least kesimpta was an early favourite from my research, and I’ve seen some people in these forums very satisfied with it…

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The above is an example of what you find if you sign up to Professor G’s microsite. Some of his stuff is beyond me but he is very good.

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Natalizumab.

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Hi James, and welcome to the forum. I’m pretty new here too (I was diagnosed in September last year).

In terms of what to expect, you will possibly be offered some treatment. I don’t know what the treatment criteria is, but I had an active lesion on my spine (plus other non-active lesions on spine and in brain) and that was enough I think to make me eligible for Kesimpta, Ocrevus and Mavenclad.

There are three levels of effectiveness of MS treatments. Kesimpta and Ocrevus are in the most effective category. Mavenclad is in the medium effectiveness category. There is information cards on all the treatments on the MS Society website, MS Trust website and the MS Selfie website. MS selfie is a website / substack written by an MS Specialist neurologist at Barts NHS Trust in London. He writes a lot about the latest research and is very interesting (though some of it is a bit beyond me!).

Before you start a treatment (if you choose to), you will have a load of blood tests to check you’re healthy enough, and will need to have a number of vaccinations. I had flu, COVID, shingles and pneumococcal vaccines. They also tested my chicken pox immunity level but that was ok.

Then there’s a looooong process of getting the drug approved for you at the multidisciplinary team meeting, actually prescribing it, arranging the funding for it and sorting out the company to actually deliver it to you (in the case of Kesimpta, which is a self injection. That’s the one I chose).

It takes about 6 weeks, but you can get your vaccinations via your GP in the mean time (your consultant will write to your GP to request it), and can’t start treatment for 2-4 weeks after having you vaccinations.

If you are wondering whether to start a treatment, there’s a very interesting article on the MS Selfie substack which might help you decide about it.

Other things you might think about doing are looking to see if there is a local MS Society group near you. Mine is very active and they are a lovely bunch of people who have been very welcoming and friendly and kind to me. They have all kinds of meet ups and also offer a weekly Pilates class and other exercise stuff which is adapted for MS. I don’t have much at all (if anything) in the way of physical disability yet, and will hopefully stave that off with the effective treatment I am on, but it’s also very reassuring knowing that the support is there.

Anyway, I’ll stop waffling on now.

Wishing you all the best and keep posting :slight_smile:

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PS the MS Society has a number of online sessions you can join for information / support. They are free. There’s one this Tuesday (27th Jan) for newly diagnosed people which I think I’m going to go to. Might be helpful :slight_smile:

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this is absolutely fantastic - thank so much for the waffle, it’s extremely helpful, extremely thorough, and very much needed at this moment. I’m glad you’ve had, so far, a decent experience.

I’ve been told I will be seen my my neurologist before the summer- does that mean there could be a considerable wait before I start treatment?

appreciate your input here - thanks again

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You’re welcome James, glad I could help :slight_smile:

I am guessing there might be a wait for treatment as it is a neurologist who has to prescribe the treatment (and where I live at least, 2 neurologists at the MDT have to agree that you are eligible and what the best treatment for you is).

It might be that the MS nurse can help you decide and relay messages to the neurologist to prescribe it. I’m not sure.

It might be helpful for you to contact the MS nurse or the neurologist via the secretary team (details should be on your hospital trust website if you don’t have them already) and clarify what the process is in your area. You could write that you are keen to start treatment ASAP, if that’s true for you.

Keep us posted with how you get on x

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gotcha. well, by way of a wee update I’ve been in touch with folks a few times and clarified that I should be being seen by a neurologist pretty soon on the NHS: within the next two month, hopefully sooner. this followed your helpful suggestion of getting in touch with them directly, and they were great, and very friendly, and things do seem to be moving.

merci a vous!

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Hi James, I hope you’re keeping well mate :crossed_fingers:

It’s all rather slow isn’t it. I hate all this waiting around. Things seem to sometimes speed up a bit then, it’s like the NHS batteries run out again. It’s ok I suppose - I guess stuff is maybe still happening behind the scenes. It’s just the not knowing that’s a bit of a pain. I’m due a letter this month about the last MDT meeting. I’ve also been told that I’ll be recieving a companion bus pass soon - I wonder what will arrive first :thinking:

….. it’s like the crappiest race ever :smiley:

I hope your bits move along soon.

All the best mate :+1:

Jon.

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all the best jon - I hope it all comes together. I’ll be watching the crappiest race of all time like it were the 2022 world cup final

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