First neurology appointment! What can I expect?

Hi everyone My name is Julie I am 30 and this is my first post here! I admire how you all support and look out for each other on this forum! It’s is fantastic for someone like me to be able to speak to others who have been where I am now to help people like myself understand what to expect! Basically I had viral meningitis 3 and a half years ago! Ever since then I had ‘post viral complications’ I suffered migraines 2/3 times a week and I was severely lacking in energy! I could live with this and I was getting on with life! (Even if I wasn’t myself at least I could still ‘get on with things’!). Anyway the past 18 months I have developed further complications! Mainly pins and needles/numbness only on my left arm and leg. My left foot has started dragging on occasion. Muscle twinges once again left leg. I try to speak but sometimes nothing will come out! (I feel like I want to pull the words out of my mouth but it just doesn’t happen!!) I am extremely fatigued somedays and I just NEED to sleep! My symptoms will sometimes calm down and I have a period of a few weeks that are not too bad. I have also had what feels like a corset being pulled really really tightly round my ribs the past two weeks on and off! Was so bad I went to hospital! I have had MS mentioned to me by a few DR’s that I have seen. I have been referred to the neurologist and I have my first appointment next week. I am really frightened at just how badly my health has become! I am having a particularity bad episode of whatever It is that I have just now! So bad that I couldn’t even manage a 20 min trip to asda yesterday without feeling like I had gone 12 rounds with MikeTyson!!! Anyway I am sorry for rambling on!! I just need someone who has been in my position to give me some advice on what to expect! I am really very nervous about my neurology appointment!! Julie x

Hi Julie

Sorry you have been experiencing so many symptoms. Hopefully your Neuro appt will be the first positive step towards some definitive answers.

I was in a similar position to you, and would say the best thing to do is write a list of your main symptoms with approximate time scales to take with you to the appointment. Try to be as brief as possible, meaning the Neuro is more likely to read the whole thing. I would also advise you to use the list as a memory-jogger during the consultation and then ask the Neuro if he/she would like to keep it at the end. That way, you will have a chance to tell things in your own words, but the Neuro will have a record of everything from your perspective to put in your notes. I did this and have been told by a number of different people since (physio, OT etc) that it has been really useful.

I can only talk from my own experience, but I think most initial Neuro consultations loosely follow the same kind of pattern. Mine started with a brief conversation about my main symptoms, and then some questions about my family medical history, childhood health etc. He then did a hands-on neurological examination - these can be quite brief or quite involved, depending on symptoms, findings and the individual Neuro. Basic things to expect would probably include ticking your toungue out, puffing your cheeks out etc; following an object with your eyes; pin-prick tests; leg strength tests; basic balance tests etc. Depending on the results of these initial tests and your presentation of symptoms etc, the Neuro will then decide on the next step. This may be certain tests (MRI etc) to confirm or help with a diagnosis.

My best advice would be to try and stay calm and ask any questions you want to, depending on how the consultation pans out. Be prepared to come away none the wiser as to what is going on, as these things take time. It is also a good idea to take someone with you who will remember the bits you don’t and to add anything important you may have forgotten.

I hope this helps a little. Good luck, and do let us know how it goes. xx

Hello Julie.

I cant realy add anything useful to Purpledots reply.

I do feel it is important to take someone along to the appointment with you. I used to go alone and coped quite well, for a few years, but then as my hearing and memory failed a bit, I found it so helpful to have a second pair of ears. I take my sis, who is also one of my carers, with me, as she knows me and my symptoms well. if I forget to mention something, she pipes up for me.

It may take several visits and tests before you get a diagnosis, so be prepared, just incase it does.

Dont be scared, nothing that bad will happen and always ask what and why they are doing each test.

Good luck.

luv Pollxx

Thanks from me too, Purpledot. I have my first neuro appointment coming up so it is good to have some idea of what ton expect. I have already had some of the sensory and balance tests done, by a specialist physio.

Hi Julie

I had my first neuro appointment in April - and another in May

Purpledot is spot on - what a helpful reply - it was exactly as described. One thing I found off putting - so don’t be surprised - is that the neurologists didn’t have the best bedside manner. They were fine but of course their heads are in a different place to ours. When I saw their reports I could see what great scientists they are - I guess we can’t have it all!

I think jotting down your symptoms is key - with timescales - much of the neuro’s decision will be based on what you tell him/her, coupled with any scans or other tests. Don’t be afraid to ask as many questions as you want to - the appointment is your time. I asked them to talk me through the scans etc and they were very helpful and patient.

I knew that they wouldn’t be able to answer my crystal ball questions about the future but I asked them anyway - and they gave me straight and helpful answers.

I decided to go on my own - and it was fine - but I think taking someone with you is a good idea if you want to.

Very best wishes to you Julie

Thank you everyone! I have been keeping a list of symptoms and dates so that is really useful! I think I am just really nervous as I don’t really have anyone particularly supportive around me! I feel as if family just think I am a hypochondriac! It is difficult when you do feel ill and fatigued but on the outside you look ok! (Right now I am awake as I have severe IBS pain and my left leg has pins and needles so bad I literally had to drag myself to the loo! This just can’t be normal!) Really appreciate everyone’s reply! Good luck with your appointment too Tinga!

And you…would be interested to hear how you get on.