Hi all, Today I seen my nuero who has all my test results back and was told I have atypical ms. He spoke a lot and I could not take in what he was saying (next time I will bring some one in with me). What does this mean? Thanks ann
I’m sorry to hear about your diagnosis today.
“atypical” just means “not typical” - but you probably knew that. As MS is hugely variable anyway, it’s difficult to say what a “typical” case is like, or to guess in what way he thought yours wasn’t. He may just have meant your MRI doesn’t look like a textbook case, or something like that. Hard to say.
He was probably a bit silly, because normally at diagnosis it’s not a good idea to bombard patients with information, because, for most, it’s emotional news - even if they expected it - and they may have trouble taking anything else in. Presumably, some kind of follow-up’s being arranged, or you’ll be put in touch with an MS nurse? Make a note of things you want to ask, to take up then. This could include in what way your MS is “atypical”, and whether this has any implications for treatment.
Some people (including me) roll up with a list of symptoms that are characteristic of MS and set the alarm bells ringing for the neurologist. There are typical MS things that go wrong, typical signs and symptoms, typical parts of the central nervous system that MS tends to go for. But MS lesions can pop up in other places in the central nervous system too, places that are not typical for MS, but still be MS because the disease process is exactly the same, although it is showing itself in slightly unusual ways. I guess that atypical (which means ‘not typical’) is the word they use for people in that category - including, by the sounds of it, you.
Don’t worry about feeling that you haven’t taken it all in yet. You have plenty of time to get used to the idea and find out all about it. I am sorry that you have had this bad news.