Symptoms

MS Xplained: My story in an app

MS Xplained is an introductory guide to the complex world of MS., in the form of an app.

Medicine X_MS Xplained_Ladywithms

MS Xplained: An app about MS

Being diagnosed with MS is hard

Ever been to the doctor and not understood what they said? It happens. And it definitely happens when someone says you have MS… The only coherent question I had when my diagnosis was confirmed was ‘can I still drink alcohol and eat cheese?‘ (yes, in the face of the unimaginable that really was my question).

Despite normally having myself together (with the ability to ask relevant questions), being told you have MS is overwhelming. There are questions you need to ask, and information you need to understand at a practical level. After all, it is your body and your disease.

But there is introductory information available

MS Xplained is MS explained by real doctors for real people with an MS diagnosis, in the form of an app. It is based on real MS stories – in this case, mine and Melissa’s. The goal is to help those newly diagnosed understand the disease and the treatment options available.

This app explains MS in a way everyone can understand. There is no judgement, and no doctor-speak. It is just the information you need to know to help you – or your friends and family – get the basics right.

As someone with MS, I can say this information would have helped me when I was diagnosed. Once you understand this information, you can choose how far you take it and decide what else you want to know (even if all you can consider wondering about is whether you can eat cheese).

Download it for free here.

 

Medicine X worked with MS Australia and MS Research Australia to develop the ‘MS Xplained’ app. Full disclosure: I am a National Advocate for MS Australia, and I did not receive any fee or reward for sharing my story or writing this post.

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.