Diagnosis in Progress - first neurology appointment coming up

Hi all, this is my first post here. I’m Lauren, 24 years old and currently in the process of diagnosis. It started with some trouble with vision (diagnosis of optic neuritis) I’ve been seen by ophthalmology, had a head & spine MRI with contrast that showed lesions consistent with MS (I have a family history - with maternal grandfather having had MS), and now I’m headed to my first neurology appointment in a week. I just wondered if anyone had any advice / idea of what to expect from this appointment and any ways I should prepare for it? I’m feeling a little lost and unsure, and have felt “in limbo” since January when this all started. Thank you in advance for any replies! :smiling_face:

Hi Lauren

If you can, take someone with you to help keep notes and provide moral support.

The Neurologist should discuss your medical/family medical history; they will conduct a number of tests - these may seem a bit odd but hang with it - touching your finger to your nose with your eyes closed, walking across the room and back; testing the strength of your grip (both sides); checking how stiff or not your legs/hips are; checking your reflexes (knees, ankles, feet, arms); standing with your feet together and eyes closed - to check your balance. Stuff like that.

They’ll take a look at the MRI scans and the MRI reports.

They will either decide then and there that you do/do not have MS; more likely, they are going to opt for something along the lines of CIS (Clinically isolated symptom/syndrome) and want to wait and see if anything else happens, do another MRI and see you in a year’s time.

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Hi Lauren. It’s many years since my first appointment but from what I remember the neurologist asked a few questions, about symptoms, maybe asked me to try walking in a straight line, heel to toe, checked the MRI and that was pretty much it in terms of diagnosis. Before I had time to pause , I had a diagnosis of RRMS. He then started talking about next steps and Disease Modifying Drugs/Treatment and probably a few other things as well.

Again, I can’t remember exactly how things progressed but i fairly quickly got an MS Nurse ( who becomes your first point of contact) and an appointment with her. And not long after that I had a home visit from a drug company nurse to show me how to inject the drug (Avonex in my case), store it etc.

My then girlfriend/ now wife was with me which was very useful in terms of remembering everything the neurologist and nurses said.

Good idea to make notes of everything - symptoms , approx timelines , and any questions you have before appointments with the neurologist and nurse.

One note: consultant neurologists don’t always have the best ‘bedside’ manner and tend to be a little overworked so don’t be at all surprised or worried if yours is a little blunt or rushed ( pretty much the norm I think).

P.S - my first main symptom was Optic Neuritis

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Honestly, I felt relieved when I heard about my diagnosis during the first appointment with the neuro. Just prepare yourself emotionally. Make a list of questions to take with you. Mine included “are you sure it’s MS and not anything else”, and then I asked about further treatment.

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I am sorry that you have all this on your plate, Lauren.

A piece of paper in a brief summary of what’s been happening and when might be a good idea, just to keep things straight in your head. Most of us are not at our best at remembering details when talking to the consultant. Other than that, go in with a listening ear and an open mind, and good luck.

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