My crisis is when I found out I had gMG. I had septoplasty surgery on a Wednesday. That Friday I was extremely tired. Saturday morning couldn't lift my arms. Started feeling short of breath around noon. By 4 my breathing was so shallow that I could only get one syllable out at a time while talking. Went to the ER and was admitted. Originally diagnosed with a stoke, left eye and left side of my mouth were drooping. When that was ruled out I was admitted to the ICU. Shortly after that a Doctor did the ice cube test on my eye, told me I had gMG. I was intubated for 72 hours. Lost my ability to swallow. Legs and arms were week. I was in the hospital for two weeks, had IVIG and was started on Mestinon and Prednisone, Left the hospital with a general weakness after being bed ridden , swallowing returned to almost normal.

Bob Ryan
How are you doing today?
I wanted to talk to you about your crisis. I have never had a crisis. Not really sure what to expect.
I've been in remission for many, many years over 30 and I'm now having symptoms again.
Blurry eyes, Double vision coming on and when I walk now I'm feeling sick ,where I need to sit down and let my body catch up. The only medication that I am on is prednisone 5 mg for many years
I don't know if I'm headed for a crisis.
I don't even really know what a flare-up is or how long a flare will last. I know that the past week my symptoms are coming on pretty quickly.
If you would, could you please tell me what you went through before you had your crisis? I'm very interested
Kay

I emphasize. It's like you are in another body. You explain yr symptoms and.... I was diagnosed with dry eye also told I couldn't have the eye surgery for the droopiness bc both eyes had to have the same droopiness and droopiness wasn't droopy enough. My PCP said all of the symptoms were a result of stress even when I started slurring my words.

Hi Cindy, That must have been terrifying. I’m so glad that you made it through the IVIG and got an actionable diagnosis to go forward with after the hospitalization.

That is the hardest part, that beginning time when it hits us hard and fast, when we don’t even have the language to process what’s happening to us. Thank you so much for being willing to laying it all out like this - it’s not easy. I hope your gMG journey since then has gone better…🙏

Hi Kay — I’m really glad you asked this. This stuff can be scary, and you deserve solid information, not fear, so here goes…

My case was an outlier. I was diagnosed in 2020 and had just started prednisone, CellCept, and Mestinon when things escalated fast. One night I suddenly couldn’t breathe well. Then my legs began giving out with no warning. The morning my crisis hit, my respiratory muscles failed completely. I don’t remember it — I woke up four days later in the ICU on a ventilator. It was an extreme presentation, and my recovery took time.

What I want to share with you is, before the crisis, my symptoms weren’t subtle — they were rapid, dramatic failures of breathing and my major muscle groups. Most flares don’t look like that. A flare is usually a worsening of our usual MG symptoms — vision, fatigue, chewing, swallowing, walking — and it can last days or weeks. It’s when our body is saying it needs attention.

What you’re describing — double vision, blurry eyes, needing to sit down — can be a flare after years of remission, but it doesn’t automatically mean crisis. The stats say that only 15 -20% of us will ever experience a Myasthenic Crisis. The safest move is to call your neurologist and let them know your symptoms are changing quickly. Early attention can keep things from escalating.

Hope that’s a help - and, this is important for me to put out there - I’m not a professional , just a guy who went through this myself. If it helps, I’m happy to share more about what my early signs felt like or what helped me stabilize after, please message me anytime outside the Q&A section….