Anonymous 18/01/18
Last reply 3 months ago
Questions

I’m set to see my neurologist tomorrow but I can’t think of any questions to ask. It’s like I have so much going on in my head that I don’t know what to say. I know I don’t have to ask questions but then I know I’ll think of them after.

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henriette
3 months ago

Were you already diagnosed with ms or not yet? Reading all of the posts here will give you a fairly good idea of what to ask. A lot of these posts answered a lot of the questions i had in my mind the past year. Once you know your diagnosis, read as many of the posts because it is firsthand knowledge of people who know what it feels like. Good luck though.


henriette
3 months ago

Sorry only saw after i posted that you actually already have a diagnosis and that you also posted other stuff. 🤐


edgarleroy
3 months ago

stumbler
3 months ago

@dominiqueg , just grab a piece of paper and scribble a list of things that concern you. This’ll clear your head.

Then, you can review that list and the questions should compose themselves. But, do write the questions on another sheet of paper, take that with you to the appointment and cross the questions off as you ask them. 😉


Anonymous
3 months ago

@ stumbler
I actually have a piece of paper I have to fill out before each appointment and I’ve done that and realized that I have all my questions now. I trust my team and my neurologist a lot and I’m comfortable with my treatment and don’t think I need to change it. Thank you everyone and thanks stumbler to always answer me


alexab
3 months ago

A good thing to do too might be record your appointment on your phone. Sometimes I feel like I get so much info all at once and forget most of it by the time I’m out. Helps me out for after. Hope it goes well!


stephz
3 months ago

@dominique Start a little MS notebook – you can write questions as they come up, take notes during your appointment, keep track of things like symptoms etc. This might be too much for you at the moment but keeping track has helped me prepare for appointments and manage my MS better: https://stephaniezihms.wordpress.com/2017/07/22/keeping-track-of-my-ms/


stephz
3 months ago

Sorry I got your handle wrong @dominiqueg


tracyd
3 months ago

@dominiqueg ,

Please excuse the lazy copy and paste from a document I prepared. Please bear in mind in writing it I had already decided on the treatment I wanted so it’s a little targeted towards people who want to fight for that treatment ….. the basics and questions to ask though are common for everyone for disease status xxx

This is the pre-prepared stuff I put together for how to talk to your Neurologist / MS team about disease modifying treatments (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.
ASK
This might sound sarcastic / preachy / obvious, I really don’t mean it to, but please don’t wait for your Dr / Neuro to offer Lemtrada – 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)
PREPARATION
You need to do all your research on Lemtrada and all the other options like Tecfidera, Tysabri etc.
• 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
THE CURRENT STATUS OF YOUR MS
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. talk to you soon
Tracy xx


Anonymous
3 months ago

@tracyd
I’m definitely keeping all your questions and everything you wrote for my next appointment. I haven’t had my second MRI yet I’ve only been diagnosed for 5months I’m still doing research and trying to figure everything out with school, work and MS I’ve got a lot going on so I do research during me time when I need a break from homework or when I’m slowly getting ready for bed. I’d say I pass out a lot when doing research but I’m slowly getting through it all. It’s all very clarifying I feel like I was thrown into a pool without learning how to swim first. For now this being my second meeting I don’t feel like I have to argue with the neurologist or his team at all they listen and I feel like they do everything they can to make everything work for me I don’t feel like we are all getting the same treatment. Most of the questions I come with right now are why’s and I know he can’t answer most of them I wrote down some non why’s and will be working on new ones with what you wrote. I really don’t mind copy and paste. Hope you have a good day and thank you very much.
Dominique xx


tracyd
3 months ago

@dominiqueg
If you need someone to talk to, drop me a PM, I’m happy to share contact details xx


mhworden
3 months ago

@dominiqueg if you are expecting a lot of new information from your neuro in response to all your , take a pen and paper to take notes … Or better yet bring an advocate to take notes. I always think I’ll remember everything (not). 😊

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