A Myasthenic Crisis Story
On May 1 I had my first ambulance ride, rescued during Myasthenic Crisis. I’ve been inspired to share Myasthenia Gravis information from a patient’s perspective in this blog. My myasthenic crisis story and blog kick-off follows.
A Somewhat Rare Disease
Suffering Myasthenia Crisis 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 skimming by at a whopping “2.”
I have Myasthenia Gravis, and it was catching up with me quickly. 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, couldn’t move, but very thankfully, had just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.” The myathenic crisis patient is helpless.
Help on the Way
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 possibly 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 during 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 myasthenic crisis 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 MG crisis, patients can (and possibly often?) remain lucid. I heard everything that went on. Whether the 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.
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 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 myasthenic crisis 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. I had started IVIG a month before, making me a sort of gourmet vampire. 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. 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 (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 crisis story. I hadn’t planned on writing one.
There were blood tests to see if any unidentified illnesses had led to myasthenic crisis. 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 crisis 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.
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. I also now know that the CellCept I had been taking for a month was fueling high anxiety on top of an already well established fear of hospital admission.
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! Why not pretend you’re the troll asking payment before neighbors could pass by my chair on the mid-levels? It definitely broke the tension.
That was the most terribly spectacular day of my history with MG. 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.
There were other scares too and so much to learn about the condition. 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 crisis story.
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