Having an MS relapse: Why the ED is a bad place for an invisible disease

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?

  1. See an MS neurologist, not a neurologist with a different speciality.
  2. 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.
  3. 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.

 

14 comments

  1. i had one experience that sent me through the roof with anger even though i could barely walk at that time of relapse. this kid, i shall say, told me that first they would do an MRI to see if my lesions were negative and then patted my legs.. that’s when i yelled keep your damn hands of my legs, didn’t you read my admit paper work?! I’m sure my lesions are not “negative” because don’t you see that light coming out of my ears? those are my lesions and they glow, like from an unnecessary MRI that you will order to prove that they are still there!!!
    that’s when my husband grabbed my hand and i was in tears from relapse sickness and pain. oh! and he also told me that MS didn’t cause pain!
    I know what you went through and now in a much calmer tone I have “educated”” these nitwits if one feels its necessary to tell me things about my body that I live in how i need 2 or should feel.
    luckily I haven’t had an ER trip in a number of months and send you nothing else but understanding from one MS’er in America. keep it up and embrace the suck I always say.

    Like

  2. Hi Lady

    I’m an American who will likely be moving to Sydney in September, on a partner visa, which means I’ll have Medicare access. I won’t have private health insurance yet (and understand there’s a 12 month waiting period in any case), but I will need to see a specialist upon arrival, and start getting my prescription for Gilenya right away. Is there anything you can share with me about the Australian health care system as I move forward? (I obv. can not pay out of pocket for any MS medicine — but what does a visit to a good MS specialist cost?)

    Thanks for any guidance you can give me!
    -Ari

    PS: The ER visits sound like a NIGHTMARE.

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  3. So crazy because when I had to go to the ER due to quickly worsening optic neuritis (I thought I had a torn retina or something urgent like that lol) the ER doc knew immediately that I might have MS, gave me an MRI and called a neurologist right away who was jumping up and down to give me steroids lol. I’ve also had horrible ER experiences, total luck of the draw.

    Liked by 1 person

  4. I agree that the fact you can text your neurologist is about the most amazing thing I ever heard. I have to be treated poorly by at least 3 receptions, plus be put on hold at least 20 minutes before I can LEAVE HIM A MESSAGE!

    Also, I learned my lesson – never go through the ER. Worst experience ever.

    Sending positive vibes and I hope you start feeling better.

    Liked by 1 person

    1. It is ridiculous how difficult it is to get through the medical bureaucracy! I am lucky with my neurologist, but the rest of the system leaves me baffled.
      I am feeling much better this week, thank you.

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  5. Wow, this is good information to know, and doesn’t surprise me. I was just diagnosed this past December, and it started with me throwing up for two days with EXTREME fatigue and vertigo so bad I couldn’t walk. On the third day, I told my husband I knew something just wasn’t right… it was beyond “just sick”. So we went to the ER. They take people in based on the severity of the problem after a quick check-in with a nurse. When I got to see that nurse, to determine how I ranked, it was so frustrating because all I could tell them was that I’d been vomiting for 3 days, was extremely fatigued, and that I was so dizzy, I couldn’t walk without the aid of my husband. Half-asleep and out of my head, how do you stress to a nurse that it’s not just the flu? They did a quick EKG (heart test) to make sure that wasn’t the problem, and then I was back in the waiting room for four hours. Then an ER doctor saw me, I explained some symptoms I’d had, he said they didn’t do MRIs at the ER, but they’d do a CT scan, which probably wouldn’t show me anything. Hours after the scan, they told me that they “found something, and it’s real tiny” but they WERE going to take me for MRIs. Hours after that, a doctor came and said it looked like MS, but they couldn’t be 100% sure. They decided to admit me to the hospital and said a neurologist would do a spinal tap the next day and review the imaging. I entered the ER at 12:30pm on Saturday and wasn’t left alone to sleep in the hospital room until 6:00am the following morning. (Then I was awaken at 7:00am for breakfast.)
    So I feel like I’ve already had to experience the lack of ER knowledge with MS before I even knew I had it! Good to know what to expect should anything ever happen again.

    Liked by 1 person

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