I have my first appointment with a Neurologist at the end of the month. My symptom diary has helped me to compile a clear, abbreviated list of symptoms so I’m all set to say exactly what I’ve been experiencing and for how long…but what do I ask? Aside from ‘I’m not being treated , how could I cope with all these symptoms right now?’ I cannot think of any other questions. What sort of thing did you ask? Maybe your answers will nudge myself and others into finding the right questions.
Really glad you posted as I’ve been wondering the same thing.Like you I also have my first appt with neuro at end of this month, I have a symptom list and have listed about 6 things, ive tried to list the most bothersome symptoms like the horrible fatigue and muscle twitching.I’ve waited so long for this appt i don’t want to walk out and think damn I should have asked him that! My main concern is that he gives me no form of diagnosis and tells me to go away and come back in 6 months, I know this a a big possibility so I’m trying to prepare for more time in limbo land. I hope you get some suggestions, I probably haven’t been much help, just wanted to let u know im in the same situation. Keep well and good luck with your appointment, Lucy x
One thing i wish i had asked and didn’t was to be copied into any correspondence from him to my GP. I would ask this. If they send you for further tests i would ask for an idea of waiting times and what they expect the tests to show. It would be worth asking about the follow up appointment too. I would avoid saying things about googling symptoms and using forums. my neuro only wanted to know about my newest symptoms (despite me having ongoing problems prior to these ailments) so it maybe worth asking the neuro what they want to know before pouring it all out. hope thats useful and not too patronising! Good luck xx
I had a few problems with my neuro during my first appointments, but ---- one thing I would say is that doctors know that we live in the information age; it’s a normal fact of everyday living - and they expect that most patients will have googled a bit. So I don’t think you necessarily need to hide / omit the fact that you’ve read about MS. In fact, I suspect it might actually annoy some neuros when they suspect a patient has been consulting Doctor Google but the patient won’t admit it!
My neuro actually opened that conversation for me by saying ‘as you’re probably aware, MS can cause a variety of symptoms’ and ‘I presume you know a little bit about it already’. I said yes, I’d read some stuff on MS Soc website. It would’ve felt really odd to lie about it, or even omit it. I dont necessarily think you need to say you’ve been chatting on forums etc - but I think most doctors would expect that patients have googled a bit. Almost everyone they see will have googled a little bit!!! It’s honestly a very very normal part of the age we live in, and it seems daft for both neuro and patient to pretend that hasn’t happened when in 99% of cases it has! Also, Googling a condition isn’t necessarily a bad thing - of course there is the danger of misdiagnosing yourself, but also there are obvious benefits for the patient such as increased knowledge / self management etc - and doctors will understand this.
But maybe you can approach it in a way that doesn’t make you sound like a self-diagnoser. You could say that you’ve spoken to your GP and that you’ve also read some information, so you arere aware that MS / ME/ CFS are all possibilities, and that you will be grateful for his opinion as to what he thinks the cause is most likely to be. That way you’re acknowledging that you’ve had some info and are justifiably concerned, but you’re not coming across as a self-diagnoser.
And yes - definitely ask to be copied in to all correspondence, and ask for time-scales for any further tests / follow ups.
Good Luck! xxx
That’s a really good point, Pingu…I’d never really thought about it like that! My GP actually told me to look up ME and Fibromyalgia on-line to learn more about them, but I still haven’t let on that I’ve been looking up MS as well! Reiki - I would definitely ask to be copied in to any correspondence…it’s the one thing I wish I’d asked and didn’t. I have had to sweet-talk my GP practice nurse each time I see her into printing me off copies of letters etc! I think the other thing I would do is, if he sends you for any tests, ask what he will be looking for, as this will give you lots of info about what he is considering as a possible dx etc. Sorry everyone…my return button has suddenly stopped working!!!
Lucy - good luck to you too! Do let us know how you get on. Birdlady - lol Its alright, not taken as patronising at all. Thankyou for your useful reply 
Pingu - I like your suggestion of how to bring up the three possibilities of MS/ME/CFS. I’ll try and remember that one, thankyou. So, I’ve got four main questions: ~ How can I handle the fatigue and dizziness (my other main problems are cognitive/ memory but I’m managing those at the moment as best I can) ~What’s the next step? ~How can I help family members understand these invisible symptoms I’m experiencing? ~Do I get a copy of the notes you send back to the GP? What do you think? I’ll leave it at that as there’s not much room left on the post it note 
The first question I’m going to ask is what do you think it could be? I don’t wanna be messed around with by the neuro like I’ve seen some people. Get diagnosed and then don’t find until years later by seeing it whilst being with their GP. I’d rather have a rough idea to concentrate on, so I can get used to that point in limbo. I got two weeks to go until my neuro appointment and nerves are already setting in… Good luck Lucy and Reiki… hope it brings some answers.
Take care,
Tsuki xxx
Good luck to you too Tsuki, will be interested to hear how you and Reiki get on too, let’s put those neurologists through their paces!! I dreamt about my appointment last night and the neuro looked like Gary Barlow, very distracting lol :-))
Mmmmm Gary Barlow… I wonder if I’ll dream about my appointment. I hope it’s Thor (Chris Hemsworth). I’ll let you know what goes on. I’ve not been in limbo long, but I don’t plan on being in it for the long run! Got my life to get on with! xx
I asked what they thought it could be got told ms. Asked for other options if not that and got told to wait for results and he wouldn’t be pushed. Maybe what tests if mri clear (assuming he does one) Axx