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1st neurology appointment next week - any suggestions?

Hello all,

I haven’t been diagnosed and appreciate my symptoms may turn out to be something other than MS. I’ve not been right since 2012 and have experienced an accumulation of symptoms including fatigue, mobility issues, a weakening bladder and double vision, although have managed to carry on as normal as far as possible.

I have my 1st neurology appointment next week and wondered if anyone has any suggestions for me to get the most out of my appointment? Should I take just a summary or a detailed history of symptoms?

I’ve had a head and neck MRI prior to the appointment so hopefully the results will be there for the neurologist to see. I had an appointment already about the double vision and they thought the cause was something neurological so hopefully the doc can also see any notes from that appointment too.

Any suggestions or thoughts would be most welcome.

All the best to everyone.

Hi Butterfly Cake xxx

I just got my neck results back and it’s all ok, however, my neurological symptoms are undisputable and my GP has referred me to a neurologist. I managed to get in for week on Saturday ( private appointment). I am in a similar situation as you, except I haven’t had my brain scan yet… However, I’ve been living with MS for 5 weeks now, I am convinced that’s what I have as so many symptoms cannot be explained by anything else… I am wondering myself what the neurologist appointment will be like, yours will be at a more informative stage as the doc will have seen your results, I suppose mine will check me out and send me for a scan as well, i just don’t know, maybe he will say ‘let’s wait and see as it is all minor at the moment’, I don’t know what the approach will be…

Wishing you all the best, let us know how you get on.

PS aren’t we going through some tough times…

Hi Butterfly-Cake, and Hi Margaret 37

I think you should take just a summary of symptoms and events to your neuro appointments, too much information and you may overwhelm the consultant. Stick to the important things. You will probably be asked for a brief medical history, which you might like to think about beforehand. The consultant will certainly be interested in any eye problems. If it hasn’t already been done, some simple neurological tests may be carried out, some involving a hammer, pin and tuning fork, reflexes etc, but nothing at all to worry about.

It’s a good idea to take a partner or friend along who can sit in with you and listen - not join in - to the consultation, you might find that you don’t remember everything that’s been said.

Diagnosis of MS, IF that is what you have, isn’t usually a quick process.

Good luck, I hope you both make progress.

Ben

Hi Ben, totally agree with your advice. I had my first MRI in April and saw neuro beginning of July. I took my husband for support and also so that he could hear the next steps to be taken. I also had a brief history of past 2 years when I started to notice strange things happening to my body. Not a lot of info from neuro at first appointment, MS was mentioned, neuro ordered more tests. August I had MRI with contrast followed by lumbar puncture followed by VEP. Symptoms during all of this have progressively become worse. Once neuro has all results we will sit down and discuss what it is that leaves me exhausted, gives me pins and needles down left arm, makes me wobble when I walk, optic neuritis twice now and I’m not even discussing the bladder problems! When the neuro confirms it is MS (GP certain it is) then I will believe it until then I will keep pretending I am fine and making plans for the future. This site is great for gathering information about the disease and getting support. Reading the advice given is very uplifting, everyone is so positive and I know if neuro confirms MS then I am prepared as best as I can be thanks to everyone here.

Hi Butterfly_Cake,

I agree with Ben that just a summary is preferable. But whatever you decide to take, remember that it’s primarily for you - i.e. it’s NOT just to hand over to your consultant, for him to sit there and read, as a substitute for you actually having to say anything.

If you’re going to do things that way, you might just as well send him and email with it all on, and not bother having a face-to-face at all, as the whole point is it’s supposed to be a two-way interaction, not just for you to hand over a list, like a petition.

If you do that, you risk that he will shove it in a file “for later”, it will never see the light of day again, and meanwhile you’ll be left without your crib-sheet, which was supposed to be your reminder of the important things you’re meant to tell him.

So take it, use it only as a prompt for discussion. IF he would like a copy for the file, give it only at the end (making sure you’ve kept a copy for yourself), so you don’t either lose it immediately, as he shoves it in his desk, or waste valuable contact time while he just sits there reading it (very one-sided).

The usual trend is that patients don’t get to see neurologists very often, or for very long. So really try to make it count - don’t just hand over the list, as it’s not a very effective use of time.

Also try to group your symptoms/problems into broad headings, instead of listing each one individually. So say the symptom is: “tremors”. Don’t have: “tremor in right hand, October 2014”, then seven items down: “tremor in left hand, June 2015”. Try to group ALL similar occurrences together, and you only need rough approximations of dates and durations.

You don’t need: “On Tuesday 12th, at 2 p.m.”. It’s enough to say things like: “On and off for about two weeks in Summer, I had…” - and say what it was.

Also don’t necessarily arrange things in date order. Arrange in order of most troublesome, upsetting, or disabling first.

Put any minor things near the bottom. That means, if you do run out of time, and don’t get to cover everything on the list, at least you won’t have left out anything big that’s really upsetting you.

You don’t want to spend half the appointment discussing your tingly pinkie, and then realise you forgot to mention an episode where you couldn’t walk or see properly - so prioritise!

Tina

x

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Thanks Ben and Anitra for your very helpful suggestions. I’m very grateful for you taking the time to reply, and what you have both said I will take on board as really want to make the most of what I realise will be a short amount of time with the doctor.

Margaret I wish you well. I personally feel for me it’s better not to attempt to self-diagnose, although can appreciate it’s scary and frustrating to know you don’t feel right and to hope you’ll find an explanation for symptoms. I’m glad you also have an appointment soon so that you can at least talk to the doctor.

Lulu thanks for sharing your experience.

All the best and thanks again.