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Confirmed diagnosis?

I saw a neurologist last week. He told me I had ms. Then the letter he wrote to my GP says, ‘the most likely diagnosis is ms’. He is referring me to an ms specialist for treatment. Does this mean I have a confirmed diagnosis or not? I’m very confused. I have two small white patches in my brain and a tiny one in my spine (which he said could have just been matter) but combined with my symptoms (Which are two episodes of tingling in legs, hands, feet, nose and neck) makes the most likely diagnosis ms. He did an MRI and an examination (which was normal). Do I need to wait to see the ms specialist to get a confirmed diagnosis? When he told me I had ms he seemed very sure but then his letter seems quite wishy washy?!

Hi Anon,

You are correct that you can only be diagnosed by an MS specialist. “Most likely” is not a confirmed, diagnosis, neither is it likely that the neuro you’ve been seeing is qualified to diagnose MS.

I don’t want to give you false hope that he’s wrong; he could very well be right. But MS is potentially one of the hardest diagnoses to make, so please be prepared that it may NOT be a simple case of “rubber-stamping”. You might have to undergo further tests (depending what’s already been done), or even have to wait and see for a while, because it has to be confirmed it’s an ongoing problem, and not a one-off incident. Sometimes, this can only be determined by watching and waiting.

There are literally hundreds of conditions that can mimic MS. Although most of them are rarer, ALL of them have to be ruled out before you can be diagnosed with MS. So your new neuro will have to be quite sure there’s no better explanation.

Sorry to be the bearer of mixed tidings. The good news is that you still might not have MS. The bad news is that finding out for sure may not be a quick or straightforward matter. Rest assured this is absolutely normal. There’s a very high threshold of evidence that has to be reached before the rules permit diagnosis. Unfortunately, this is very often not explained properly, and people can end up thinking they’re not being taken seriously, or that their case is being handled negligently. At least if you know it’s a very challenging diagnosis, and common for it to take some time, you won’t feel this has happened to you.

Tina

x

As far as I know, any neurologist can diagnose MS (it wouldn’t be possible to only have MS specialists giving diagnoses as there are many parts of the country where there are no MS specialists). It is very unusual for an MS specialist to change a diagnosis given by another neuro, but it does happen, however, the fact that your neuro said that he was referring you to a specialist for treatment suggests that he is confident you have MS.

Neuro’s letters are often more wishy washy than expected. It’s one thing to tell someone that they have MS, but it’s an entirely different matter to put it in writing, so they tend to hedge their bets, just in case, especially as there is no definitive test for MS and there is always a chance of getting it wrong.

If you want to be sure, why not give your neuro’s secretary a call and ask to clarify your diagnosis?

Karen x