Last reply 2 years ago
Hi all joined a few weeks ago as a mum!

My 23 year old daughter was diagnosed just before Christmas, we have our first appointment with the ms nurse tomorrow can anyone give us tips on which are the best questions to ask.

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2 years ago

Hi Quills,
I was diagnosed nearly a yr ago at 21. I think it came as a shock to my parents n myself. But we’re living life same as we did before diagnosis ? alot of the questions I initially asked came from emotions n fear n so we’re nt as constructive as the questions I asked in my second appointment. I’d recommend asking about treatment, what type of ms if ur nt aware, how soon treatment can be started and if ur daughter is experiencing any harsh symptoms how can she deal/help these. I’m sure ur daughter will have lots of questions come to mind herself as being diagnosed does make you question alot of things. Hope i helped x

2 years ago

Hi qullie
after ten years I still not sure what the best questions to ask are, 🙂
but I do reccomend both you & your daughter read through the posts on here & other MS chat sites, the offical information websites – treatments, self help, diets etc can be contradictory, confusing & cold but the anicdotal evidence written by real MSers shows how we are not alone. Don’t let your daughter (or her family/you) feel alone with MS.
She doesn’t have to be active on the sites just read the posts & realise we all going through the same (insert your favorite rude word here) Even with a good question there are no right or wrong or hard & fast answers, it’s a journey we are all on together.

2 years ago

This is the pre-prepared stuff I put together for how to talk to your Neurologist / MS team about disease modifying treatments and what the curent state of a person’s MS is (excuse the copy and past) :
Thoughts about the ‘which treatment’ conversation with your Doctor
First things first – go in there armed to the teeth with knowledge and be prepared to fight for what you want.
This might sound sarcastic / preachy / obvious, I really don’t mean it to, but please don’t wait for your Dr / Neuro to offer a particular treatment that you might want – ask for it. As the saying goes ‘If you don’t ask you won’t get, and don’t complain if you didn’t get something you didn’t ask for’ (it’s a bit like not giving hints or telling people about what you want for Christmas and then being upset because you got something you didn’t want when you didn’t tell anyone what you did want)
You need to do all your research on first line DMT’s like Lemtrada, Tecfidera, Tysabri etc. – The ones that can stop this shitty thing in it’s tracks or a least slow it’s progress.
• Write Pros’ and Cons lists for each :
– cross reference the potential side effects of each in relation to your medical history write down what things might negatively impact on existing things for the ones you don’t want.
– pros and cons for your life, your family, your job
– Prepare a list of reasons ‘why’ your preferred option is the best for you in relation to the other options available.
– Write / print out your list of questions along with space to make notes next to them during your consultation, mark them off as you get the answers and write the answers next to them
– Take someone with you to the appointment who knows you and your MS, give them a copy of the questions / pro’s cons as well – two people can hear the same thing in very different ways – a second ear is a great help – they may also have questions you’ve not thought of that they can ask for you
In relation to YOUR MS – ask your Dr to answer the following questions (add more if you have them)
• Has the doctor reviewed your most recent MRI’s?
• Has your Dr done a comparison of your most recent and previous MRI’s?
• Is there deterioration since your previous MRI?
• Did they do a brain and full spine?
• Was it done with contrast so they could see active lesions?
• How many lesions (active and inactive)
• Where your lesions are located (ie. Front lobe, rear lobes, left side / right side / near your eyes / in the middle bit that looks like a butt crack)
• Which parts of the nervous system are the locations of the lesions connected to?
• Is there any volume loss to the brain mass?
• If it’s described as ‘Mild’ MS ask them why they describe the brain damage that the lesions are causing as ‘mild’ how when the lesions are reabsorbed as the breakdown and leave black holes behind that your remaining brain mass shrinks into – the faster brain atrophy than in a non-MS person – is that their description of ‘mild MS’ – it’s just mild brain damage that will result in mild brain atrophy – so that’s alright then isn’t – not like being ‘a little bit pregnant’ at all right?
The question that nobody can answer in relation to MS is when will ‘the big one happen’ it could be your next relapse or it might not be for years. The big one could change your life hugely – We are all one relapse away from that situation every day that we wake up and get out of bed – Ask what is the most effective treatment currently available that can maximise reducing this risk?

The final question:
If they were delivering this diagnosis to their own child / partner – which treatment would they want their child / partner to have? Which would give them the best possible opportunity of a long and healthy life with as little disruption and disability caused by MS as possible
Don’t let them get off on the side track of side effects with that one – you simply want the honest answer to the question – what would you do for your child to protect them against the worst that MS can do to you – losing their sight, their ability to walk, ability to work without disability. That should cover all the bases – there’s not a lot they can say to that one.
Think I’ll stop now

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