Do you need active symptoms at first appointment with neurologist?

New diagnosis and before diagnosis
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Hello everyone

I’ve been lurking in the background here for a couple of months. This is my first post. Stupid question alert!

The story of how I came to be here is a bit complicated, as I moved quite rapidly through an emergency route having ended up in SDEC (via NHS111) with what I thought was a series of mini strokes. After an MRI Head & Spine, a number of other tests, medical history and follow up with the on call neurologist at the emergency neurology clinic, I received confirmation that I have a ‘demyelinating disease thought to be MS’.

I have since been urgently referred to an MS specialist neurologist. I’m still waiting for that appointment to come through but I have been told I will be seen before August is out.

I’m very lucky in that the worst of the symptoms which landed me in SDEC in the first place have now subsided. So this is probably going to sound stupid but I’m now wondering, have any of you been sent away and not received a definitive diagnosis because you weren’t presenting with symptoms at your appointment?

I ask this because I had similar symptoms in 2022 but following an MRI at that time and my symptoms going away, nothing further happened. So I just wondered if being in remission delays final diagnosis.

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Honestly, don’t worry. Neurologists do know the typical trajectory of RRMS relapses. :slight_smile:

The doctor will probably be interested in what happened (and stopped happening) when, so if I were you, I would go in with a brief timeline to aid my memory.

I hope that you have a productive consultation.

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Thanks Alison. I’ve already written my medical history/symptom log which was reviewed by the on-call neurologist along with my test results. It was fascinating putting it all to paper. I have had periods of what I now know to be MS symptoms flare up every 18 months or so for the last 10 years, yet MS never crossed my mind until it was mentioned by doctors in A&E in May.

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So far as I know I don’t think so and as @alison100 says neurologists know that symptoms can come and fade. The MRI will be the main diagnostic tool along with a history of symptoms- it definitely helps if you take a note of your previous symptoms, when you experienced them etc ( if only for your reference when the neurologist starts asking questions! It’s a long time since my diagnosis but I do remember feeling somewhat anxious / head in a spin and struggling a bit to answer all the neurologist’s questions)

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Thanks @Hank_Dogs!