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Diagnosing MS: Why it is so hard

MS is hard to diagnosis

MS is a boutique disease. It is difficult to define and to diagnose.

This is because the manifestation of the disease – the symptoms each individual experiences – are so varied that any two people with MS may look like they have different diseases.

For example, an individual with a sudden speech impediment and balance issues has the same disease as an individual with numbness in their legs and pins and needles, and they both have the same disease as someone with bladder dysfunction and difficulty swallowing.

You can find a non-exhaustive list of the many symptoms of MS from the American-based National Multiple Sclerosis Society here. None of them are that attractive (and I can say that, as I have MS).

For both patient and doctor (even specialists), it can be incredibly difficult to put such disparate symptoms together for an accurate diagnosis.

The McDonald Criteria govern the diagnosis of MS. In short, this means:

  • Identifying demyelinating event(s) (which after diagnosis will become known as MS relapses)
  • Proving at least two lesions via an MRI scan (note the four white areas near the red arrows)
  • Excluding other diseases that could also explain the event and lesions.

While diagnosis of MS is possible with one MRI (as happened for me), others are not so lucky. Even in this day and age, some people with MS take decades to have their diagnosis confirmed, or are misdiagnosed and hence mistreated for years.

But we can improve management of symptoms after diagnosis

In my first post, I wrote ‘my diagnosis was not a high point for the medical profession’. I still think it was a crapshoot (and a crapshoot I bear emotional scars from). But looking back, my diagnosis was relatively painless compared to what I have learned others go through.

I’m not sure how the diagnosis of MS can be improved. I will leave that to the specialists. But the difficulty with diagnosis leads directly to a lifetime of difficulty managing the symptoms, particularly during an MS relapse.

And this can be improved.

In my experience, the two points that matter most are:

  • Adequate knowledge and understanding of the disease by doctors (missing in the emergency room)
  • An effective doctor-patient relationship.

Expect improving the approach to MS relapses (including the emotional wellbeing of patients) to be the subject of future posts.

PS: While I have posted images of my brain before, this is not one of them.

5 thoughts on “Diagnosing MS: Why it is so hard

  1. I haven’t actually read many people’s stories about first hearing their diagnosis. Just yours, which sounds a little like mine. I remember the first ER doctor saying, “Well, we did find something on the CT scan that’s only like a centimeter large… which doesn’t sound very big, right?” Anything that they see on the brain that shouldn’t be there seems very big to me. And then the second ER doctor coming in later going, “Ahhh… so I see your diagnosis. That’s a bummer.” Yup. That’s a bummer. I guess I felt like bedside manner in the ER could have used slight improvement. 🙂
    Now I’m kind of curious about others’ experiences, though… and the ones you’ve read that sound like horror stories!

  2. So good to read your article in the Herald-Sun today (27.5.2015). I have had MS for 43 years, since I was 20. I am still a fairly high functioning sufferer. I had to give up work in retail 3 years ago due to balance issues,tend to drag with right foot a bit,but I feel pretty lucky.
    I have relapsing remitting MS,have a wonderful husband and carer, and three beautiful boys.
    Looking forward to reading your blogs! So glad I discovered it!

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