@Suzy_Twining 

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Suzy_Twining

How to get an MS diagnosis

I was referred to the neurology dept. for a MS assessment. I have been previously diagnosed with ME/ Fibromyalgia by a rhuematologist. The neurologist I saw for the MS assessment was not the same consultant who initially wrote to me to let me know I was on the waiting list for a MS assessment. I was surprised by that - is that standard practice? I was really hoping to see the neurologist who wrote to me. Anyway, the neurologist I saw said I had had 'lots of tests' before and if 'one is tested constantly, something would eventually turn up'. I have only had one blood test this year when I saw the rhuematologist and an 'emg' test that rhuematologist arranged, even though it may have not been esp. relevant to me. (Prior to that, I had blood tests in March 2017 for ferritin and Vit D.) In my MS assessment, the neurologist did a practical assessment - reflexes etc , and gave me a diagnosis of Functional Neurological Disorder. He said I could not have MS, because the symptons I have had since 2006 would have become much worse over time. I did mention that I had had a couple of flares lasting about 6 weeks that had affected the limbs on the right side of my body (the original symptons started on the left side in 2006). Although visually you would not notice any of the symptoms. I don't understand how the neurologist could rule out MS and diagnose me with FND without a scan? I waited 6 months for the appt. and it was a poor experience. Should I ask for a second opinion or even have a private consultation?
@lauraforde

I can only confirm my personal experience. I was referred to the NHS neurology department and decided to go private after being told of a 10 week wait. It cost £1000 for the two consultancy appointments and 40 min scan. Certainly here in Scotland you still need a NHS GP to refer you for a private neurologist. It is a deeply upsetting time for you and you need to make sure you are being listened to. I always listed my symptoms and my husband insisted on me talking about the next appointment the night before so during the appointment everything was covered. MS has so many different faces and my neurologist said the only way to rule in/out MS these days is a head/spine scan no matter how well the patient is. But he is a MS specialist. Hope this helps

@Suzy_Twining

Thank you. That is exactly what I have been told subsequently by an MS organization. The only way to rule in/out MS is via a scan, not just by the physical assessment, as the neurologist did. I will wait for the letter from the neurologist ( I have asked for a copy), and then go to my GP and see if I can have either a scan or a second opinion, or a private referral even if I have to pay.