MRI

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.

Living with MS: Five moments I knew I am sick

I’m bored with MS

Living with MS is not pleasant. But one gets used to it. It becomes a little mundane, and quite frankly, I’m bored with it.

But a few moments have cut through the boredom and stunned me. Some I found funny, others not so much. Surprisingly, all have occurred when I have been relatively well (in other words, when I could see the lighter side of life).

My five ‘I have MS’ moments

  1. A highly respected neurologist advised me to sit in the sun and drink a glass of red wine. This was in response to my plaintive queries of ‘what can I do?’, the subtext being that for as long as there is no cause and no cure, I may as well enjoy life while I can (whilst getting my Vitamin D). Thanks, medical establishment.
  2. I was informed that I will have to take my own Gilenya to hospital. Gilenya is expensive, and if I turn up in emergency with a broken leg or any other random issue, I will be obliged to bring my own (effectively treating myself for MS in hospital).
  3. I realised my hospital medical file for one year requires a ring binder (not a manilla folder). There are also reams of pre-printed patient barcodes, presumably in preparation for the hundreds of forms and requests and sample vials I will generate. The hospital is going to require an entire shelf for me one of these days.
  4. I find myself googling Medic Alert badges, pill cases and walking canes. I do this constantly. Why are they all so unattractive? If I had a choice, Hermes would design my Medic Alert badge, Mulberry the pill cases, and Marvel a cane. That’s right, Marvel. I want something that looks like it came straight out of Tony Stark’s work shop.
  5. I realised I have a preferred MRI machine. Yes people, I like the one on the right on the upper floor, not the ones on the lower floor. Think of how many MRIs I had to have before I could make that observation.

Believe me, I am not going to forget these moments. These types of experiences belong to the very sick.

If I didn’t laugh I’d probably cry, but then I might spill my wine.