A Pre-Crisis Myasthenic Flare Story
On May 1 I had my first ambulance ride, rescued during pending Myasthenic Crisis after a lengthy Myasthenic flare. I’ve been inspired to share Myasthenia Gravis information from a patient’s perspective in this blog. My nearing myasthenic crisis story as a cautionary tale with advice of symptoms leading to myasthenic crisis, and symptoms MG patients should heed in deciding to go to the hospital to avoid Myasthenic Crisis
A Somewhat Rare Disease
Calling the rescue squad is a true way to make May 1 live up to its May Day moniker. Fortunately, the fine EMS crew arrived quickly and did a wonderful job in keeping a terrifying situation calm, while getting me to the ER before my neurological strength sunk further below the 2 it was hardly reaching. The hospital notes stated I was nearing Myasthenic Crisis – a condition which requires intubation, as the body no longer has the muscular function necessary for breathing. This is a fancy way of saying you’d be dead without a medical team and breathing equipment.
I have Myasthenia Gravis, and it was catching up with me quickly with this myasthenic flare. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and dealing regular cane use and double vision from a few years on while obeying the P’s and Q’s of living with the disease.
I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk with a gravely voice, and couldn’t move, other than having just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.” I was helpless.
I had been admitted for an initial IVIG induction being admitted from the ER during another myasthenic flare a month before, and it had been a rough ride since then. In great fear of another hospitalization (long story) and the thought that my next treatment was nearing, I railed against my neurologist’s good advice to go to the hospital for another dose of IVIG after he had received an e-mail where I described my drastic symptoms.
I had the big idea that I’d power through, when I was making Froggy on “The Little Rascals” sound like a Soprano diva, practically needed a seatbelt to stay in any chair or recliner, had no neck support whatsoever by day’s end, and was having an irritatingly regular occurrence of choking on dinner or drink throughout the day. Choking just so on spit was also common. This on top of minimal arm strength and walking a bit like Frankenstein. As my breathing count on one breath got lower and lower as days went by after treatment, I tried to hold out. I was lucky to get to 20 at the best point in the day. On a good day I can go to 60. Singer’s lungs. There were periods of time when my eyes would simply not open at all. I can be very stubborn. MG is more stubborn than me. Every time, MG is more stubborn than me.
Help on the Way for Pre-crisis Myasthenia Gravis
The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and yes, stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital. I was extremely grateful for the EMT’s help in rescuing me before I declined all the way to myasthenic crisis.
My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenia based hospitalizations as best as I can. She has since forgiven the traumatic event. I have done my best to get on with life after that forced restart.
During myasthenic flare nearing myasthenic crisis, even when outwardly immobile and unable to talk, patients remain lucid. I heard everything that went on. Whether the patiet’s eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying it would’ve been without vision. I cannot imagine how much more terrifying crisis and intubation would have been.
A Crucial Question
I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. I had been in the ER before in more minor stages of nearing myasthenic crisis and knew the drill. MG symptoms also worsen with stress, and being misunderstood is always stressful for me.
I took this golden opportunity to ask my EMT caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stats notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.
At the ER my neurological strength was barely 2/5. This is what myasthenia is all about. 2/5 means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below and definitately not involving Freddie Kruger, but still.
I still had to pee! When it came time to take my MG medicine from home (Mestinon / Pyridostimine Bromide), when asked, we said “it helps with nerve / muscle communication.” My poetic and philosophical nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!” His recitation of verse by Greg Allman was extremely comforting. In the ER, you do what you do to get through.
How I became a Gourmet Vampire
The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies – usually good as gold against further nearing myasthenic crisis. I had started IVIG a month before, making me a sort of gourmet vampire. It had been a suggested treatment months before that, before any myasthenic flare for worsening mobility symptoms. I only take choice parts of the blood.
In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion). If I hadn’t yet queued in as to my condition, this was a bit of an eye opener (no pun intended – I still couldn’t do much visually). I was aware of someone coding in another bay, and thanked my blessings to still be alive, while also thinking privately “here we go again.” I’ve had my share of health drama. At some point during the morning I was transferred to my own doctor’s hospital to continue the IVIG treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.
My Own Daytime Hospital Drama
It took until the second hospital staff shift during my stay to convince all workers that I truly could not walk, while my husband was finally getting some rest at home. MG is an invisible disease, and even though I could stand with much difficulty by that point, forward motion other than falling failed me. Eventually a special chair was procured to save my caregivers trouble getting me across the few feet to the bathroom, and to save me stress. Note to MG sufferer’s families: Immediately ask for the Sara Seat. I was on choke risk status for 48 hours, but didn’t have any appetite either way.
I saw a neurologist once a day for about 5 minutes tops (occasionally more if colleagues were present to halt his exit). Otherwise I saw nursing and tech staff. In general, there was simply not much information provided. The future was a big blank of “well, this is the usual treatment regimen, and most people improve” type talk, but no certainties were given whatsoever. It seemed only to be important to this young doctor that I was alive. It was daunting to think that alive could possibly continue in this helpless manner, when I had gotten by thus far with no major crisis. I guess it was finally time to gather my own first-hand information for this Myasthenia Gravis story. I hadn’t planned on writing one.
There were blood tests to see if any unidentified illnesses had led to the flare. There were none. Questions about my stress level were top on the list, and I know my dear husband was probably suspect. If I tried to address the stress of the hospital and dealing during the past month with scraping by after an initial, non-EMT involving ER admission and hospitalization for myasthenic flare on Easter, my statements were shrugged off. Having no information is extremely stressful to me. Face planting on a bed, because a non-MD staff member doesn’t seem to know your condition is also stressful. Unfortunately such mistakes and misunderstandings seem to be par for the course. Read more on that in my blog post “The Truth About Being a Fall Risk with Myasthenia Gravis.“
Through all this and double room drama, there were really more good staffers than the few star bad examples forever burnt into my memory. They seemed to have a similar life philosophy, for which I was thankful. Within 5 days I got to where I could stand up to use a walker with extreme difficulty. I could take inch-long steps then. I was being routed into in-patient physical therapy, but was emotionally kaput, stressed out, and missing my dog. I traditionally do not do well at all in hospital settings, and not in the “everybody hates the hospital” kind of way.
Finally, with a bit of finagling, I got the go ahead from my own neurologist to go home. Getting up 3 flights of steps took over an hour, but like I said above, I’m stubborn! When worried neighbors passed by me resting on the chair my husband placed on the landing, I just said I was a troll and demanded money for their safe passage. As I wrote earlier, I try to make the best of situations, and humor is a must. It definitely broke the tension.
That was the most terribly spectacular day of my history with MG. I was lucky to avoid myasthenic crisis. The other most spectacular day was in late July, when I took my first purely recreational walk since May 1 in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze. Had I not been so lucky as to get to the hospital in time, actual Myasthenic Crisis lays you up for much longer.
There were other scares too and so much to learn about the condition. I have experienced a myasthenic flare again since initially writing this about a year ago, but the symptoms did not progress to such an extreme. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your MG diagnosis. It’s complicated. Sadly that’s a part of every MG story.
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