@KeepSmyelin99 

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KeepSmyelin99

Further investigation/Misdiagnosis

Hi 👋🏻 hope we’re all doing relatively well today! Just back from my 2nd appointment with the neuro since my diagnosis and got some questions for other people with MS/MS related things: At my first appointment with him, he said I might have an MS related disease instead called “NMO”. We did tests and that’s not the case, but I came across something else that it could be, called “ADEM” (Acute Disseminated Encephalomyelitis) I suggested this to him today and at first he seemed a bit defensive, asking whether I wanted him to give me another diagnosis that sounded less severe. But then he listened to what I had to say and has ordered a specific blood test and an MRI to check if I’ve had any more activity. Has anyone else been investigated for ADEM or MOG disease? I *may* have been misdiagnosed with RRMS and have ADEM or MOG disease instead. Looking for any related experiences! Thanks 😊
@Stumbler

@keepsmyelin99 , I think that most of us recognised that MS is notoriously difficult to diagnose. This is why Neuros can be reticent in making a formal diagnosis. It is also the reason why there is the McDonald Criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria). Take care when suggesting other possibilities. Our Neuros have spent many years studying our type of health conditions and can take offence with our amateur attempts at alternative diagnoses. It's best to keep in their good books.

@KeepSmyelin99

Hi @stumbler Thanks 😊 I tried my best to take care in suggesting other possibilities. My neurologist said “So do you want me to rediagnose you then?” and I made clear that I simply was seeking reassurance so that I could be confident in my treatment decisions. That seemed to sit well with him and that’s why he’s ordered the bloods and MRI. I think the fact that I’ve been reading up on possibilities helped him to see that I truly understand what I’m suggesting (he could tell that I’d delved deeper into journals, studies, diagnostic criteria etc. instead of just googling and skimming Wikipedia) Although I agree with you that suggesting misdiagnosis is a big thing and can come across as quite rude when our specialists have studied and treated for years and years. Thankfully my neurologist took the time to listen to what I had to say and is happy to explore that avenue with me after realising that I was very serious and not merely suggesting a condition that had a more positive prognosis. It’s just strange because I can’t seem to find anyone who has MOG disease or has been investigated for it...