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.
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.