Last reply 9 months ago
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Good morning
Hope you are all happy and well today. ☺️

I am just hoping for some advice on questions I should ask my neurologist when I go next week for my first appointment. I believe I will only have 30-40 minutes so want to get the best out of it.

Most of my symptoms have been sensory in nature this past month and have subsided quite well aside from a few things here and there
: warm sensation in arm and shoulder
: ache in neck that comes and goes
: some altered sensation in my legs (still functional and I can climb stairs and drive)
: slight pressure by my right ear
: cramping in my little finger left hand
I am sleeping better but I think that’s due to reduced anxiety as my partner has been a really good support.
I have asked my family for questions they are hoping to get answered
But I would like to ask you guys who may have the experience of these appointments.
Any advice would be very gratefully received.
Thank you in advance 😘

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tootes
9 months ago

You say this is your first appointment with neurologist.

Have you recently been diagnosed?
Have you an MS nurse? And perhaps seen them already?Perhaps they can give you a guide to this appointment. Is it for you to just meet and for the neurologist to get an idea of you and your MS? Or is it to talk about potential medication to support you?

If you don’t have an MS nurse, do ask if there is one in your area that you can see. They are a good link with your neurologist and a point of contact for those queries that come up.

I find writing notes before hand helps, just to get my thoughts in order.

Think what do I want from this appointment:
So is it just to familiarize myself with the medic?
Talk about my current symptoms?
Talk about potential medication, so disease modifying drugs(DMD) that you see a lot on this group.

So I tend to list my current symptoms
A few short lines on how I have been
Say if I doing anything to complement my treatment, e.g.. yoga, physio, counselling
And then a short list of questions.

The medics I see, really like my notes, as it gives focus to the appointment. They read them and go through the points ask me anything that comes from my notes. Then do a short physical check of me. So check what I can sense or not in my limbs, face etc… Then asks me to walk and balance.

If they don’t want to read your notes, it helps you as its a reference for you, as we can all forget bits.

And above all relax, you will see them again. Do look at friends/family questions but please ensure that you put your own questions, queries first.

My consultant is lovely, and they are here for you, for your benefit, to keep you in the best health that’s possible.


wonders
9 months ago

Thank you @tootes what a lovely informative answer.
I think I didn’t explain myself correctly in my post. I do not have a Dx just symptoms at present

This is my first appointment with the neurologist from the Gp referral.

I was experiencing quite severe parathesia (forgive me if wrong spelling) with nerve pain in left arm and back that took me to A&E however they did a brain CT scan all normal and sent me home.. the pins and needles continued went to gp and they said I had Brisk reflexes in my upper body .. neuro exam of bottom half normal- I had plantar reflexes that were normal in both feet. Then lost urge to urinate although this is coming back a little more each day now.

I have a very mild altered sensation in my left foot and a tired ankle in right side but it’s Definitely more left sided..

I have a list of issues going back to my 20’s that I have complied to tell him but I wondered what kind of things I should ask him rather than tell him x
Thank you for taking the time to reply xx


stumbler
9 months ago

@wonders , this first appointment will involve a physical examination, reflexes, walking heel to toe, etc.. And, then as discussion of your clinical history, i.e. what’s been happening.

Further tests will be required, usually starting with an MRI scan. If this doesn’t prove conclusive, further tests will be required, e.g. Lumber Puncture and/or Visual Evoked Potentials.

So, no diagnosis, but this is just the first stage.


wonders
9 months ago

@stumbler
Thank you for taking the time to reply 😊
Okay thanks that makes sense.
can you take someone with you to this appointment?


stumbler
9 months ago

@wonders , yes, having someone with you is an excellent idea. Two sets of ears hears more than one set!


cameron
9 months ago

I’m assuming you’ve had the diagnosis and this is your first appointment after confirmation of MS – and also that it’s like most people’s i.e. the relapsing-remitting type. If this is the case, your neurologist will be a) wanting to know how you are overall following the diagnosis process and if any new symptoms have appeared b) discussing treatments and c) possibly giving you info re: the support services available. The likely outcome is that s/he will leave you with reading to do about the various drugs available, so that a decision can be made as soon as practicable. S/he may preface this with a recommendation for a particular one. This is likely to be based on your symptoms and your lifestyle (e.g. many drugs are not suitable for anyone wanting to start a family). Be aware, too that the current thinking is to hit MS hard before real, irreversible damage occurs., so the first-line drugs (mostly the injectables) are prescribed less often. Many neurologists, though, are not MS specialists and not necessarily up to speed with latest research findings and may be very conservative in their approach to treatment. It’s also true that the stronger drugs can bring their own issues, so the decision may not be straightforward. If you familiarise yourself with basic info about what’s on offer (look at MS Society and MS Trust websites), you’ll save time when talking to the neuro and you’ll be able to ask questions related to what you’ve read about. I’d also read up on your hospital’s website about what MS services they offer. You should be getting support from their MS nurse and if you’re not, that’s definitely something to bring up with the neuro. xx


cameron
9 months ago

@wonders – apologies! I was interrupted when I began writing and didn’t realise when I came back to my laptop that you’d clarified the situation and that you haven’t yet had a diagnosis. I’ve just seen what others have posted in the meantime and totally agree. Well, if it does turn out to be MS, what I’ve suggested may come in at a later stage. All the best for the appointment, xx


wonders
9 months ago

@cameron @stumbler thank you 😊 I will update after Tuesday. I really appreciate your time xx


tootes
9 months ago

@wonders , as @stumbler says it will be more about further questions about your history and current symptoms, tests and potentially referral for other tests/scan. So potentially an MRI.

And a good thought and advice, do take someone with you.

Do take the notes you have made, and raise your questions.

I hope that it goes well for you.

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