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Not yet diagnosed

So. Here I am. Completely new to this. Stressed. A bit of background. In 2015 I noticed my eyes were moving on their own and ended up with a diagnosis of acquired nystagmus. Scans and neuro examinations followed, which showed three visible lesions. At the time my symptoms were put down to my low birth weight and previous pancreatitis - neurology specifically stated no evidence of demyelination. Fast forward to 2019. I have: Worsening nystagmus. Double vision. Eye pain. Tingling hands and feet and most recently face. Numb legs. Altered sense of taste. Vertigo. Ridiculous brain fog. I drop everything and have minimal strength compared to years ago. These symptoms have been coming and going for some time. I’ve also just had my second child and while pregnant things were okay but within 5 weeks of my son’s birth my symptoms have reappeared. Off I plodded again to the GP (interestingly a new GP who didn’t discard my complaints) and have got a new neuro referral. GP seems convinced it’s MS and my history fits the McDonald criteria easily but am so stressed (normally nothing bothers me at all) and don’t really know what to think or do. I have some time to wait before the appointment but I am going out of my mind and questioning my sanity. Has anyone else had a diagnostic experience like mine? What makes it worse in my case is that I’m a neurological nurse and a little bit of knowledge is dangerous. Please can someone stop me going insane?!

Hello Lou

Being a nurse makes it hard. Being a neurological nurse makes it at least twice as difficult. Knowing a fair amount about neurology and MS must be agonising for you. But at least you’re not a neurologist!!

As I’m sure you know, if your lesions in 2015 were not demyelinating, then at that point you did not have MS. So the chances are you don’t now either. But that doesn’t help when you have a long list of symptoms typical of MS.

Keep in your mind that there are other conditions that share symptoms. And remember that a GP can’t diagnose MS, in fact no one can diagnose MS without clinical evidence.

You’ve said you fit the McDonald Criteria, you may have had possible relapses differentiated in time, but you didn’t have NS type lesions on your initial scan, so strictly speaking, you don’t as yet fit the McDonald Criteria.

Try to forget some of what you know. Concentrate not on whether or not it’s MS, but on your specific symptoms. Try writing a complete timeline of your history and symptoms. Include the dates when symptoms began, changes in the symptoms, dates when things diminished or vanished.

See if you can relax a bit and stop worrying. I know that’s easier said than done, but once you’ve written down everything that’s important, you may find you can put it out of your head a bit.

Sue