I would really like to hear everybody's crisis stories. What were symptoms? What was done for you? I'm still unsure about the definition. I have looked at many medical sites and they are of no use at all. Thank you. I have neuro appt. tomorrow and would like to talk to him about this and be armored with info from actual mgers who have experienced this.

I had a crisis about a month ago where I couldn't breath well and my lungs felt like they were filling with fluid, husband called 911 and the EMTs thought I was having panic attack, transported me to hosp then they transported me to another hosp who actually knew what MG was. To be honest, for me, rest is the key. Like yesterday I was feeling pretty good so I decided to clean the house, never made it past the master bathroom. Although it is shiny and clean now it was all I could do. As soon as I feel the weakness coming I stop what I am doing and just rest. Annoying as I was always a go-getter.

Annemarie,
I've never been hospitalized with crisis, but that's been due to ignorance, stuborness, and yes, stupidity on my part. I've been lucky to have been able to handle it myself with Mestinon, my CPAP.

Each time, I felt myself sinking deeper into the weakness. I would end up sitting on the recliner or laying in the bed or couch and would hit a point where I couldn't speak, move, or even blink. All I could do was to lay there amazed that I could be that weak and still be alive. I was told long after my first serious bout with MG that my shallow breathing and extreme weakness were signs I was in crisis. I was just so lucky my breathing didn't completely stop.

I have had some close calls with this bout, but can now recognize the weakness getting bad enough and get to my Mestinon before I get so weak I can't even signal someone to give me a pill. I did have one night this bout where my breathing did stop, but I got to my bi-pap machine and laid with it on my face after taking a Mestinon until I could breath again after taking the mask off. It happened rather suddenly, after I drank just a small shot of alcohol to help me get to sleep (something I never do, but was having so much trouble shutting my brain down due to concern over my husband and his head injury that I thought it might help me relax) and within 5 minutes it was like I just couldn't draw air in or push it out. Very scary!!

Good luck with your appt.

I've experienced a crisis before, and the doctors in the emergency room thought I had an inflammation in my spine due to viruses. Lol. I can't really recall much, basically its just when I couldn't move at all, my whole body was trembling badly and my friends said my face was green. I felt as if I couldn't breathe and gasping for air. It all happened very quickly and I couldn't speak as well. Its just when everything starts coming all at once and I just felt like I was shutting down..

My first crisis was actually what got me diagnosed. I have asthma and have since I was child. I've been hospitalized for asthma attacks in the past.

I had just finished a very long round of steroids for my asthma during which I felt amazing. About two weeks following the last steroid dose, I experienced double vision, drooping eyelids, had trouble swallowing & then breathing became very labored.

I thought it was another asthma attack, but it sure felt different and my FACE looked like it was going to fall off.

I was diagnosed in the ER of our small hospital by one of the new ER docs who has a mom with MG. Perhaps the steroids I had been taking off/on for years for my asthma had been masking/ treating my MG symptoms. I had a Tensilon test in the ER & could not get over the short lived difference.

I ended up in the ICU for 4 days, but once I got some Mestinon & more steroids I did do better for a while. I had a thymectomy 6 months later.

That was 10 years ago, seems like yesterday though.

Jenna

I have been through three, my symptoms repeat themselves, each time I had a new symptom added to the mix. I am happy to say, I have not gone into crisis, since I started my mestinon ! I have been warned, it still could happen, but it hasn't !!
Mary

Annemarie, Some people with MG never have one and some are so severe that they have more than one.

It's funny, I just had a conversation with my neuro today about all this.

I'm the kind of person who learns from their "mistakes." I had a crisis in 2005. I had been feeling progressively weaker. I was being reckless and doing too much while in the hot, summer weather. I had about 4 breathing episodes where it felt like I would stop breathing on the spot. I rested and got better. Then in July, my back was so weak that it went into spasm and I couldn't walk all weekend. Only bed rest for two days helped. Then I had breathing tests on the following Monday. My MIP (maximum inspiratory pressure) kept going down with each successive try. MG gets worse upon exertion.

Then two days later, I was still real weak and my oxygen stats were hovering around 94%. They were not going up, no matter how much I rested. That sent me to Urgent Care, where the doctor did a neuro exam and later told me I could not squeeze his fingers. I thought I had been squeezing them very hard! So you can get weak so slowly that you think your muscles are normal strength when they are NOT.

When I got to the hospital (yeah, I drove), I could hardly breathe. My O2 stats were dipping into the high 70's. That is how fast you can go downhill. It can be lightening fast.

Anyway, there is a LOT you can do to prevent a crisis. You can keep your immune system as happy as possible by sleeping enough, reducing stress, eating GOOD foods, staying out of the heat and not overdoing things. Oh, and avoiding infections!!! You can take whatever meds you need to keep you that way, which is different for everyone. I know people who are "maxed" out on meds and then there's me who, so far, can handle MG with only Mestinon and common sense. The other drugs are relatively contraindicated for me for various reasons.

Don't compare your situation to others. MG is odd and is different for everyone. I hope you had a good conversation with your neuro.

Annie

If you guys can afford a Nonin Sportstat Oximeter, get one. It's really the best investment I ever made for my stupid MG.

Thank you, all of you. My mg is in early stages and mild so far. Although, looking back, I've had bouts of weakness, like my arms weighed 100 lbs. and I couldn't do anything but lay there. I don't know what's what anymore. I skipped my neuro appt. I was very depressed the night before and just didn't care anymore. I have a marriage in "crisis", so that just doesn't help things at all. He's angry at my medical bills and my script bills. I wish I could work so I could support myself, but I haven't found one that lets me just sit there all day!! Thanks again for all your responses. I will be more aware of my body now and realize the signs before they get too far. Annemarie

Annemarie, so sorry to hear your relationship is strained, when you need the support. I think we have all been there at different times, & hope you both come through ok. This economy doesn't help, never mind having an illness on top of things. Do you have any hobbies you can do while you rest ? Or start somrthing you enjoy?
Mary

i'm sorry for what you're going through-it makes me appreciate my hubby even more and my family and best friends. stay as strong as you can because even being strong mentally helps the mg. get outside everyday even for 5 mins 5 times a day. fresh air does wonders for your mind and spirit. know we're all pulling for you!!