Hi all,
I hope you’re enjoying the sunshine (if there’s any where you are!) 
What are questions you wished you asked and/or were very glad you did ask in your initial medical appointments appointments, especially to neurologists? What really helped?
Obviously will be personal and specific to each individual, but really interested in what has helped with diagnosis journeys, managing MS and/or sparked a light bulb moment of understanding for you personally.
Here are my scrappy ideas so far:
-Is my amount of legions considered a high amount? If so, does that impact if my condition will progress?
-Based on where my lesions are, what symptoms would you expect? What should I watch out for?
-When tracking symptoms, what is useful information for clinical teams? e.g. dates of onset/disappearance, severity etc
-Does the location of my lesions make an impact on any symptoms of my condition progressing to MS and/or developing to other types of MS, and will it impact my progress?
Please link me to similar threads if this has already been covered - I couldn’t spot anything, but apologies if this topic reoccurs!
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Can you remind me where you are in your diagnosis ‘journey’?
(5 minutes ago it was absolutely pouring with rain here - west side of the ‘central belt’ in Scotland. Beginning to wonder when we will get the next dry days 
)
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‘In your opinion, how would you describe my MS in terms of how it is presenting itself now and what does that suggests to you about my future?’
And assuming you’re RRMS:
‘What is the most effective disease modifying treatment that you can offer me and when can I start?’
‘What assurances can you offer about upgrade pathways to a stronger DMT if my MS still isn’t well controlled?’
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Hope the downpour has cleared up by now, @Hank_Dogs! Fingers crossed it starts to feel a bit more like summer soon - has been a mixed bag in South East England too…!
Still very much in the early days of diagnosing - my legs/torso/arms went numb suddenly back in Jan, so after some A&E trips, have already had the joys of brain/spine MRIs and a lumbar puncture (so not the best start to 2025 ). Have chatted to a few neurologists already so very lucky, but this will be my first meeting with a consultant after the lumbar puncture to really discuss results and either get an MS diagnosis and/or find out any next steps to keep monitoring whether any new lesions/symptoms crop up etc.
Very up for any ideas for all kinds of questions however since who knows where I’ll be later down the line and/or may prove useful to anyone else lurking on the forum!
Beautifully worded, @alison100! Especially good question re: DMTs - haven’t had too much of a deep dive into treatments just yet and really good preemptive question to understand the process of how to change gears if a first DMT wouldn’t quite do the job. The NHS can be a bit cryptic sometimes so worth asking when you’re with someone who knows all the processes - immediately added these to my list!
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I suppose the first thing is to take someone with you. Unless you are a remarkably cool and relaxed person you are probably going to forget a lot of what is said and discussed. After what must be around 35 sessions with my MS Nurse I can still leave thinking ‘dam, I forgot to ask about …….’ Or ‘what was it she said about ………’
I think I would make a note of any strange / unusual previous symptoms: when and how long they lasted and take that with me to the appointment. It was Optic Neuritis that took me to the MRI and neurologist but thinking back I realised that I had experienced a period of tingling in my arms and a period of what I thought was ‘palsy’ on one side of my face. Any experiences like that can help the neurologist in making a diagnosis .
If you are given a diagnosis of MS then you will probably be given a list of Disease Modifying Drugs/ Treatments to take away and consider. Ask where they sit on the spectrum of ‘effectiveness’. Emerging thinking is that MS should be hit hard in its early days but I think some neurologists still take the route of trying some less effective ones first and seeing if they work.
A very general question of what happens next. I’m guessing that if you are given a diagnosis of MS then you might not see the neurologist again. I used to get annual appointments but with lack of resources etc etc my main contact and the person I see twice a year for ‘routine ‘ monitoring check ups is an MS Nurse ( I see mine twice a year and am in e-mail contact if I have any questions/ worries etc. I haven’t seen the neurologist for years and probably won’t see him again unless there is a sudden change/ worsening of my symptoms).
Beyond that I can’t think of anything in particular. Don’t be surprised if the consultant can’t answer all your questions about if and how the MS will proceed. MS is very unpredictable and its effects vary from person to person. Oh, and don’t be surprised if he/she doesn’t have the best of bedside manners! I thought mine was a bit brusque and rushed when I first saw him but it was just his way.. I got used to him and he is OK.
Good luck and all the best.
(Today it’s light showers and 13C !)
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Thank you so, so much @Hank_Dogs - such a detailed, thorough and thoughtful list. Bet this will be super helpful not only for me, but I’m sure lots of other people reading, too.
Will definitely have someone else on hand at the appt taking notes/remembering my key questions - everything completely falls out my brain, too…! Bringing up any other examples of previous symptoms etc makes sense. I potentially had some eyesight/vertigo difficulty last month, so will mention.
Really useful to know that I’m likely to have less consistent appts with neurologists specifically in the future, as well as the fact that there will likely be a lot of unknowns when looking ahead. Good q re: the DMTs - will read up a bit on those pre-appt and ask re: ‘effectiveness’ if I’m diagnosed and they have initial recommendations.
Again, really appreciate the detail here - will have re-read again before my appt and has given me some fab talking points.
All the best with you too and hope you’re holding up!
( Bloody chilly down here too, and also had a big downpour this morning! Hopefully getting it all out the way before summer properly kicks off )
@Hank_Dogs @alison100 Thanks again for all of your help here last month - had my appointment a few days ago and all of this came in handy. Sadly did get an RRMS diagnosis, but felt very prepared, had a chance to ask a lot of questions, and wasn’t rushed out of the room! Will have a big process this week and then get thinking about DMTs when my next appointment goes in.
Both of you are such insightful and lovely presences on this forum, so again - really appreciate all your help here. Hope you have lovely evenings and weeks ahead 
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I am sorry that you have joined the club. It is very good of you to update us all and to give such kind comments when you have rather a lot going on. Thank you.
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My sympathies on the diagnosis of MS but I guess it provides some clarity and a way forward. I’ve been on Avonex for around 18-19 years now. It’s one of the early DMTs and now seen as less effective as the array of newer ones ( there are a lot more of them than when I was diagnosed- with RRMS). In addition to looking at DMTs I do think it’s worth looking at diet and exercise for MS folk. Lots of information out there on this. Mediterranean diets and the like. In general I follow the sort of ideas suggested by ‘Overcoming MS’ - living well with MS. The general mantra of ‘what’s good for the heart is good for the brain ‘ is also worth keeping in mind.
There is so much information on MS these days and it’s easy to get lost in it. Looking up Professor Gavin Giovanonni is useful - someone at the forefront of thinking and understanding although some of his stuff can be a bit detailed and complex - but generally optimistic about the future.
All the best
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Prof G is my ‘how-to’ guide too.
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I can think of a question I did not ask, and regreted it. In 2020 I had my very first relapse, optic neuritis. After tests, they labelled it as Clinically Isolated Incident. I should have asked: what are the chances of getting diagnosed with MS within the next 10 years, after an incident of ON? I didn’t. I googled instead. It would have been better to have founf out straight from the doctor’s mouth.
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@MariaB123, a good question - hope this helps others who are diagnosed with CIS. So hard to think of questions which will really help when you’re put on the spot in appointments.
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