Spoiler alert: If you are one of my more squeamish friends or family, don’t read this post. Also, this is a rant. Apologies.
I had an ‘MS fall’
I had a moderate MS relapse last week. This is upsetting for obvious reasons, but to be honest the worst part about the entire fiasco was dealing with the medical establishment. The Emergency Department (ED), to be specific.
The coup de grace of my relapse was losing consciousness in front of my father and niece. I woke up on the kitchen floor with my one-year-old niece looking down at me from her high chair (sorry, little one, I hope you aren’t going to remember that). The only thing I remember is the sensation of violent spasms in my left hand side. My father, who witnessed me fall, assures me I was unconscious for no more than three seconds and there were no visible spasms.
I was in Sydney visiting family and not in Melbourne where I live, so I texted my neurologist. He told me to go to the nearest hospital.
And so an hour later I found myself walking into the ED.
The ED is a terrible place for chronic disease
I went to the ED because of the spasms on my left hand side that caused me to lose consciousness – a new and frightening symptom of my MS.
The ED didn’t understand this.
The neurology registrar insisted that I might have cardiac problems. In his defence, I am on Gilenya. Gilenya has the unfortunate side effect of slowing the heart. And so I was happy to go along with his tests: after all, I want to be notified if people start fainting and having heart attacks on Gilenya.
The tests confirmed I was not in cardiac distress. However, after confirming that it became apparent that the ED had no idea why I had lost consciousness. The ED didn’t seem to care about the spasms… I couldn’t (and still can’t) understand it.
The patient-doctor relationship crashed and burned.
The head neurologist – a stroke expert – turned up after seven hours. He examined me, said I was having a relapse, and that I should go home to rest.
Telling someone with MS to rest is like reminding someone to breathe.
He then went on to say he didn’t believe in administering methyl prednisone in my case because the drug has long-term side effects.
Lets just say I lost my temper. I take a tablet that may give me liver disease: long-term side effects aren’t high on my to-give-a-damn-about list.
The ED then demonstrated their collective lack of understanding of MS: my discharge sheet said ‘Astrid looked healthy’.
I walked myself out of ED and went home to a bottle of wine and a distraught family.
The difference between a stroke neurologist and an MS neurologist
After that debacle, I saw my neurologist in Melbourne this week.
He believes I had a relapse. He said he would have given me the methyl prednisone had I been in Melbourne. He has booked an MRI to confirm whether there is a new lesion and to set a new baseline. And he has given me a script of oral prednisone to take in case I ever find myself in the unfortunate situation of having a relapse and being treated by doctors who miss the point again.
My neurologist even has a name for how I lost consciousness. It is called a tonic spasm, and it is an uncommon symptom of MS. It has nothing to do with my heart or Gilenya, it has everything to do with an MS relapse in action.
And that, my readers, is the difference between a stroke expert and an MS expert.
So my lessons learned?
- See an MS neurologist, not a neurologist with a different speciality.
- Have a back up plan. From now on, I will have a letter from my neurologist and a script for prednisone on my person at all times.
- Advocate for myself, even if that means disagreeing with the ranking neurologist of a hospital.
For those of you with MS, what have your experiences in ED been like?
Post script: I have a neurologist who answers text messages of distress. If nothing else, last week I learned that I am in the care of the best damn neurologist in the country.