I am just returning home from the hospital after my first MG crisis. I had pain in my sides for several days. i thought it was the intercostals, but it must have been the diaghram. It has been 90 degrees for a few days and have been feeling very weak. I thought I was better and tried to return to work. I work in a "green" building that means it is hot and humid because they don't crank up the air conditioning. It was 81 degrees in my cubicle and humid. I could not catch my breath or take a deep breath. I tried to reach my neuro, because I thought if I got enough prednisone in me I could avert a crisis, but I did not know how much was safe. neuro never called back and I ended up in the ER. I heard them mention venting and I begged for the BIPAP. They put me on Bipap and Shot me full of steroids. Spent the day in ICU and 2 more days in step-down ICU. At any rate I avoided the vent, thank God. I am home and feeling much better but I do not want to step outside for the rest of the summer. I am so glad to report that the ER, doctors and nurses, knew exactly the right thing to do. I was hoping for plasmaphoresis, I really think I needed it. Instead they send me home with a boat load of steroids. Is there anything I should have done differently?

kathie

I am sorry this happened but glad you got through it - especially without having the vent. Sounds like you need to follow up with your neuro ASAP

Kathie, I'm so sorry you had a crisis. Pretty scary, isn't it?

I had that chest wall muscle spasm/cramping thing a few days before my crisis, too. When any muscle group becomes that weak, it's a sign to go to bed, call the neuro, and stop doing anything.

Well, a "green" building doesn't mean no A/C! It means that it helps cool and heat more efficiently! In your case, the green equates to money. And a fan at work won't help much when the overall environment is so hot and sticky.

I think you did what you could once you got to the hospital. Did you dial 911? You should do that first, instead of trying to reach your neuro. The hospital can always contact the neuro after you get there. And they might have more luck in reaching him!

Do you have an oximeter? Did they check your O2 saturation while sleeping? After 3 days, my O2 was 94/95%, but it was 66% while sleeping!!! You might need a pulmonologist to check that for you with an overnight oximetry test (which you do at home). Do you still have the BiPap? Did they order one for you? If they didn't, you could be having significant hypoxemia while sleeping and not even know it.

Some days I get a few petechia on my face or neck and know I've had trouble breathing the night before.

Do you have a fan? Keeping cool now is so important. Once you've had a crisis, it takes so much longer to fully recover. Don't kid yourself into thinking that you can be your "MG normal" even while on the steroids.

Did they give you a tapering schedule? Did they give you an initial IV dose of Solu-Medrol and then the steroid tablets? Did they say to take calcium/D and have good prostaglandins like olive oil or walnuts or whatever? Any other direction?!

They try to avoid plasmapheresis because it's invasive. But steroids can make you worse before you get better. I agree with Sue that you need a conversation with your neuro about all of this. It might need to be over the phone though! Don't push yourself right now.

We MGers need to listen to our bodies daily. Whether it's an O2 level that is slowly going down, inability to grip objects (a big sign of an impending crisis), entire face drooping, inability to do anything difficult, yawning, increased need for sleep, choking on air, and so many other signs, we need to heed them and STOP. REST. And call our doctors.

I hope you will stabilize and get better. I'm glad you had a hospital that knows what to do. You can feel good about that! But they did drop the ball on home care. And on assessing your breathing while sleeping. So that's something to cover if you have another crisis.

Speaking of home care . . . do you have a walker? A cane? A reacher grabber? A chair to sit on while taking a shower? There are a LOT of things you can do to minimize the impact of MG.

You just take it easy, okay?


Annie

Annie, you are truly something else!
We know that you're in the middle of your own personal crises, yet here you are reaching out with your vast knowledge and humor in an effort to help and comfort others.
Bless you dear lady ❤️

Thank you everyone for your kindness. Thanks you Annie, I hope your flooding is receding. I have been on Bipap for 6 months. I read a post with attached article on the internet about using BIPAP during MG crisis to prevent the vent. So when I heard them in the ER talk about venting, I begged for the BiPAP and they did it and shot me full of steroids. That was able to manage the crisis for me. I had the whole sleep study done 6 months ago. O2 levels were low 80's at night and had numerous episode of stopping breathing with no snoring.

Neuro, pulmonologist and primary care dr all came day 1 to hospital. I made sure I had Drs that were associated with a Hospital ER that new had to handle MG. I had my paperwork copies of all my meds, doctor and history, so they called everyone. They gave me solu-medrol IV while in the hospital. Around 360 day1, 240 day2, and 120 day3. I asked to go home after they said no plasmapharesis. i was still very weak, but I can do the steroid thing myself at home. I have air conditioning and all the fans on at home and breath comfortably at rest. Any activity (walking to the bathroom) gets me huffiing and puffing a bit so I am taking it very easy.

I have had an exaccerbation since Feb - I drop everything, My right side of my face droops (almost stoke like) all the time even after mestinon and the fatigue is overwhelming. i have been bathing in a chair for 2 years and have all the grab bar things. The visiting nurse and occupational therapy is coming to the house. The walker, hospital bed, etc gets delivered on Monday. I'll spend my day in the recliner until tomorrow.

I am relived it is over and feel as well a I do as long as I do not do anything. I am on a prednisone taper schedule and see my neuro in 7 days and Primary dr in 10 days. I am out on disability until further notice. I am glad, I just can't manage the heat with the progress of my MG.

The good news is I have an appointment in 4 weeks with DR Drachman at John Hopkins. I think I will ask to stay on disability until I see him. My neuro is good but very conservative and I need more aggressivve treatment. I am not willing to settle for this quality of life until they try more things: thymectory, other immunosuppressants, ritux etc..

Take care everyone and try to stay dry Annie.
kathie

Okay, good. I'm glad you've got it all taken care of. I still think a followup with a pulmonologist is a good idea. They can also set up a plan for you if you start getting worse in the future.

I really hope JH can help you.


Annie