Posted by: Gavin Lehmann | July 26, 2009

Why MS can take so long to diagnose

I’ve heard of many people who have been told they have ‘possible MS’ or ‘probable MS’ or it takes YEARS to diagnose and they’re often left wondering ‘Why is it taking so long? Why haven’t you given me a diagnosis yet?’ and the reasons are two fold.

The first is the fact that, for a lot of people, being told they have MS is a life altering moment. They may argue that being told you have ‘probable’ MS is worse, and I can see their point of view, especially when to themselves they have MS, but you need to bare in mind that when you’re in a negative mindset you only see the negatives. At least with possible or probably MS you still have the hope that it might be something else, unfortunately for many they don’t see that side of the argument, they hear the letters M and S and their mind starts conjuring up all these worst case scenarios (we all do it, about everything, and the media really doesn’t help in that regard). No neuro wants to diagnose someone with MS and would you rather not be in limbo land and have them continue with tests only to have MS ruled out after five years? If the neuro is 80% sure you have MS, tells you you have ‘probable’ MS, there’s a 20% chance you may not have MS, 1 out of 5. In a room of 20 people with ‘probable’ MS, four get to go home without the booby prize. Yes, it’s a horrible five years for the other 16, but would you not want to be one of the four that get to go home with the Ferrari?

The second reason MS can be so bloody hard to diagnose is the fact that it’s so insidious. It’s like the criminal mastermind of the auto-immune disease world. It doesn’t leave any one single piece of ‘evidence’ that you can say ‘it was MS!’ with any real conviction. No, the police must first rule out all the other suspects first. You’ve all played Cluedo? It can take forever, and taht’s just with four players. Now imagine there were 10000 plyers, and you had to first rule everyone out first, before you can declare ‘Aha! It was Mr Plum with the candlestick in the library!’ You can see where the neurologists dilemma lies.

If you’ve been told you have probable or possible MS it could by a whole host of other possibilities. You just need to try and find the positives, you could be going home with the Ferari…

Gav =)


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