What questions should I ask?

hello, this is my first post here so hi to you all.

I’ve just got my first appointment through to see a neurologist and I’m not sure what questions I should ask.

I’ve been having symptoms for a while, starting with problems with my balance (last year I was playing on a giant inflatable - it’s a knockout style - and couldn’t stand up on a pillar), problems wih my right eye, tingleing in my hands and feet, tightness in my leg, abbs and back. My balance and the tiredness are the worst parts - i’ve fallen down the stairs twice and a few other times I’ve gone over for no reason. I find it really difficult steping overmy kids toys that are on the floor. Also I’m constantly tired, I wake up and start yawning - I used to be able to get by on 5 hours, 6 and I was golden - now any less that 8 and I’ll need an afternoon nap.

I’ve already had an MRI and a load off blood tests - blood tests came back clear apart from slightly elevated iron levels which I’ve got a separate referal to a hemeotologist for - my GP thinks they will just monitor that for now rather than treat. I also had a bout of bells palsy (after my GP refered me to neuro and from what I’ve read not a common symptom of MS) - I spent a day in hospital while they made sure I hadn’t had a stroke.

I just don’t want to walk out from the neurologist and 3 mins later think why didn’t I ask about that

Also does anybody know how roughly long the appointment should take? I need to decide if I’m going to take the whole day off from work or not - appointment is 10am. I might just take the day off and chill out for an afternoon anyhow.

Also does anybody know how roughly long the appointment should take? I need to decide if I’m going to take the whole day off from work or not - appointment is 10am. I might just take the day off and chill out for an afternoon anyhow.

hi, hope nobody minds me giving this a bump.

My appointment is next week, I’ve decided to take the whole day off. I’m still having probelms with my balance but the fatigue isn’t as bad - I think that’s because I’m starting to know my limits so dont push myself as much.

The Bells palsey has almost completley cleared up now, I can’t quite whistle as well as I used to but it’s a lot better than it was.

Hi GHD, I also,have 1st neurology appointment coming up and would also like people’s advice/input for this and tips to ask. I have kept a diary symptoms for past month and also list of triggers etc, past history of possible related symptoms, diagram/body map of pain, tingling etc so I can be clearer to them the assessment/history of my problems. Cheers Ally x

I have been through this very recently, the appointment length varies on the amount of information the Neuro has to go through with you.

The way to look at is that the Neuro pieces the picture together bit by bit until he has all the information, so if he’s conducted all of the tests and scans he needs to he will talk you through his findings and you will have to think sharp and get the information from him.

Everyone’s circumstances are a little different, mine unfolded like this:-

  • Meeting 1 - 10 Minutes - We need MRI’s
  • Meeting 2 - 15 Minutes - carried out electrical testing for Neuropathy, checked MRI & Blood test, requested lumbar puncture
  • Meeting 3 - 10 minutes - Discussing findings, suggest treatment & review, requested additional bloods
  • Meeting 4 - TBA

I have a pre-diagnosis (of MS/Lupus) which I didn’t 100% see coming, so only asked some questions:-

  • What do the results mean?
  • How will that affect me?
  • What do I need to do?
  • What happens next?
  • Do I need treatment?
  • Who will provide this treatment?
  • What is the treatment timescale?

The questions I wished I had asked were:-

  • Could you write the specifics down for me?
  • How many bands were in my CSF?
  • What was my ANA reading? (Lupus specific)
  • Is there somewhere I can go for support?

Take comfort that most Neuros are well versed and don’t like to alarm people, they lack beside manner and like to get facts out quickly and clearly. They aren’t too wooly, so won’t talk options through with you unless they are 100% certain.

Relax, clear your mind and if you can take a clear thinking person with you who can ask questions on your behalf, or mentally note whats being said.

Hope this helps? Best of luck.

thanks for the advice

Thanks SR , that’s helpful Ally

So I had my 1st neuro yesterday, some small marks on my MRI, being handed over to a MS specilist Neuro and I need to have an LP. It’s what I was expecting, so not really a shock. More waiting now for more test results.

Allyf12 glad to help.

GHD that’s good news, LP’s are very worthwhile, they aren’t as bad as people make out, they aren’t comfortable but they are done for the greater good, things should be a lot clearer once those results get back.

Best of luck