Last reply 3 months ago
Hi all

I have my first appointment this month to see my neurologist. Not sure what to expect. I’m actually dreading goin and scared. Any tips on what to expect?? What to ask??

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grandma
6 months ago

Hi Barbarella, just saw your post as I was turning in. You must have lots of questions for neurologist and ms nurse if you’re getting one. Don’t rush, write down anything you think of before you see him/her. There is no such thing as a stupid question as far as ms is concerned, try and take someone with you, don’t be put off and don’t panic nothing worse than stress for ms. Good luck and hope to hear from you again soon😝


edmontonalberta
6 months ago

@barbarella

Hi – I read your post from a month ago. In my opinion, the appointment will be a waste of time; nothing to worry about.

You need a spinal tap, blood tests plus a brain scan. Until these are done your neurologist knows nothing. They are just making an educated guess – wasting your time & theirs. Except they are collecting a big paycheck talking with you.

As @stumbler stated in your last post, walk in with written records so you do not get distracted & miss a symptom of yours that might be relevant. Walk out of there with tests set up so your Neurologist can properly analyze.

Good luck,


californiadreamin
6 months ago

Watch this quick video from a good ms doctor.


nessieb73
6 months ago

Hi,
Please don’t be scared, they are there to answer any question (no matter how daft you think it may be) and to find answers with you.
Write down questions that you want to to ask.
List all symptoms you feel that you’ve had, even if you think they may not be ‘related’.

I think MS trust to other valid organisations often have info or videos on what to ask or how to prepare.
If you haven’t had one already, you should ask to get an MRI done and they will probably set up blood tests. I didn’t need a spinal tap as my symptoms were pretty clear, so you may not need one once the mri has been done.

If you’re comfy having someone with you, bring them and maybe even task them with asking the questions. They maybe more pushy about asking them than you 😉

All the best


barbarella
6 months ago

Hi nessieb73. To be honest I don’t know what is wrong with me. I’ve had problems for years and they are getting worse. My drs in surgery have more or less basically ignored what I’ve been saying. I’ve been asking for about 6yrs to see a neurologist. Eventually referred last October


barbarella
5 months ago

Hi all


highlander
5 months ago

How’s tricks? All good?
How’s your journey going?
Keep smiling.


barbarella
5 months ago

It’s hard going. Getting me down so much


highlander
5 months ago

Hi Barbarella,
Sorry for not getting back earlier been a bit busy.
Have you seen the neurologist yet?
If so how did it go if you don’t mind me asking.
Keep smiling


barbarella
5 months ago

Saw neurologist on 17th of April. Got 8 tubes of blood taken. She used a needle pricking my left arm Nd leg then right arm Nd leg. Left side I don’t really feel it. Right side bit better


stumbler
5 months ago

@barbarella , and did she suggest some more tests, e.g. MRI scans?


barbarella
5 months ago

Hi stumbler. I’m waiting for a brain scan and MRI. No letter yet. Surprise. I phoned them the other week. I should get a letter soon.


stumbler
5 months ago

@barbarella , you need to keep on their case. It shouldn’t take that long to supply an appointment letter.

It’s the squeaky wheel that gets the oil! 😉


barbarella
5 months ago

I’ll phone this week again


barbarella
4 months ago

Hi stumbler. I had my brain scan today, so here’s hoping they find out what’s wrong with me??


stumbler
4 months ago

@barbarella , it will give the Neuro some further facts to help them determine the problem (that is, if they located your brain! Ha Ha!).

Be patient, but keep on their case too. 😉


barbarella
4 months ago

Cheeky monkey. Can’t do a brain scan if no brain


stumbler
4 months ago

@barbarella Cheeky? Guilty as charged.

But, I bet it brought a smile. 😀


barbarella
4 months ago

It did. I’m absolutely knackered and so sore driving to Aberdeen yesterday for my appointment


stumbler
4 months ago

@barbarella , so you needed that smile, 😉


barbarella
4 months ago

I really need to find out what is wrong with me. I’m not coping


stumbler
4 months ago

@barbarella , you need to go easy with yourself. You have a lot going on, so you need to take care.

Distraction therapy – rom-coms, wine, chocolate. You name it, pamper yourself.

Just try and switch off, whilst the wheels of the NHS turn. The stress you are building up is counter-productive and helps to make your potential MS progress, something you don’t want to happen. 😉


cameron
4 months ago

@stumbler is right (as usual). There are a lot of opinions and views about what causes MS and which is the best drug to go for. What everyone agrees on, though, is that stress makes it all worse. So, while you’re waiting for your appointment, you can at least try and stabilise the situation. As @stumbler says, that means treating yourself very, very gently. Indulgence is the name of the game. I’ve had MS for fifteen years and nothing since diagnosis has been nearly as awful as waiting for that first neuro appointment. Things ARE going to get better, so you need to relax now to be in the best mental state possible to meet your neuro. Big hugs xx


barbarella
4 months ago

Stumbler wine and chocolate?? I don’t drink never have done. Not a massive fan of chocolate. Sitting here tonight watching tv, my lips are twitching and so is my left arm. I’m not doing anything to cause it. Electric shocks in my feet are getting more frequent and pain wise worse


stumbler
4 months ago

Oh, @barbarella , I may need to come round and educate you in my hedonistic ways.

But, what do you do to treat yourself? You just need to take your mind off things, so that your brain can start to relax a bit and try to repair some of this damage that is going on.


barbarella
4 months ago

Treat myself??? I just need to find out what is wrong. This has been going on too long.


stumbler
4 months ago

@barbarella , I don’t mean treat yourself, like become a Doctor. I mean treat yourself with a gift or a treat, to lift your mood.

It’s not a job for us amateurs to undertake a medical role. That’s best left to the medical profession. 😉


barbarella
4 months ago

I know you mean well. But there is something wrong with me. There has been for years. But drs just seen to want to ignore me. I’m struggling


stumbler
4 months ago

@barbarella , you’re on the right path to get a diagnosis now, but this does take a bit of time.

You just need to take care of yourself before the next step in the right direction. 😉


barbarella
3 months ago

Hi. Still no word of my results. They were back last week. So yet again getting stressed waiting. Since scan I’m worse. What does it take to get a simple reply from a scan??? They’ve been back since last wed/ Thurs.


stumbler
3 months ago

@barbarella , contact the Patients Advice and Liaison Service (PALS) at your hospital. They should take on the issue and rattle a few cages on your behalf. 😉


barbarella
3 months ago

What do they do?? Never heard of them before


stumbler
3 months ago

@barbarella , they do “what it says on the tin”, but there are some more details here :-

https://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

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