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I got my neurologist appointment - what to say?

My appointment came through earlier than I was expecting as I was told by gp it could be a long wait. Anyway I am really nervous for the appointment plus I have an endoscopy appointment the very next day so that isn’t helping my anxiety.

I was diagnosed with fibromyalgia just over 2 years ago after a year of tests to rule things out and countless blood tests but I honestly feel it could be something else like ms. My cousin was diagnosed with fibromyalgia then 3 years later was diagnosed with MS. It took me months for my gp to refer me to a neurologist but she finally did it. I don’t know what to say at the appointment. Do I ask if this could possibly be ms or should I keep my mouth shut? I don’t want him thinking I’ve been consulting Dr Google and convincing myself I have something but I don’t want to waste this appointment by not asking questions that I am genuinely worried about.

When I went I just took my Mum and I wrote down all the problems I had been having. I took someone and wrote things down as my memory is shocking at times !!! The Neurologist was amazing so patient and really listened to me he then did a reflex examination. After this he told me he suspected MS but wanted to do further testing ( I had only had a head MRI at this point showing small lesions in MS hotspot areas) so I went for further tests. I would strongly recommend noting down your issues and taking them with you. All the best for your appointment xx

I am taking my mum with me too. She’s my voice when anxiety kicks in and my memory for when I forget what doctors have said at appointments. It’s such an important appointment that I am scared I mess it up so I’ll definitely write a list (I usually have a long one when I visit my GP lol) The appointment is on a Sunday which is really bizarre but I am not complaining at all. I just need some answers, I am housebound, I need a walker to get around and the OT refuses to approve me for a stairlift because she says ‘fibromyalgia is in the head’ and I’ve to stop being ‘lazy’.

chuffing rude OT you saw! glad your mum is going with you. if you haven’t had an MRI already, they will probably want you to have one. they’ll do their own blood tests too. then a physical exam and who knows what else.

Hi

It’s good that you’ve got a list of symptoms. Try writing down rough dates when things started, how long they lasted or whether anything has got better.

And a second pair of ears to remember everything that’s said is important too.

Don’t forget, if you don’t understand something that’s said, ask the doctor to explain it.

I wouldn’t necessarily mention MS unless the neurologist asks you what you think it is, in which case, they’ll be more open to you asking whether it could be MS. Often they like you to present symptoms which you think might be connected and they then make a tentative diagnosis, or order the tests which will prove it is or isn’t MS (or whatever the neuro thinks it could be).

To be honest, some neuros are more open and honest than others. Some will talk to you quite openly about what they are thinking and others like to keep more distance. So asking them questions is important, such as ‘what is that test for?’ And ‘what does that tell you?’ Plus of course, ‘what happens next?’

Hopefully you’ll get a nice open, friendly neurologist and come away from the appointment with a clear plan of what is happening.

Sue