First crisis
 

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. :cool:

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?

:hug:
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.

:hug:
Annie

Pains in chest wall are starting again. I think I need plasmapharesis. Neuro said no in the hospital. What is the criteria for plasmaphoresis and why is the neuro so reluctant? any input would help. Ivig takes a week to work. Is there anything else they can do?

thanks
kathie

Kathie, How is your weakness overall? Steroids can make you a bit worse before you get better.

You might also have atelectasis from not breathing in deeply enough. That can cause pain, too. Did they do a chest x-ray?

I'm worried about you. Are you in bed? That's where you should be post-crisis. Do you have anyone helping you? And I mean doing things such as making meals. I couldn't even do that after my crisis. I couldn't do anything! Not even being on a computer.

If you feel you are getting worse, dial 911. They will have no choice but to do pheresis.

I hope you'll be okay. It's survival time, and you can't risk anything making you worse.

:hug:
Annie

I am in my recliner. Can't get up the stairs. I am like I was pre-crisis. If I don;t do any activity, i am fine. I feel those chest wall spasm/pain but they are mild yet. I am trying to avoid crisis/ER.

Called neuro and GP. Do you believe they want me to go out for blood work andd chest CT to rule out pulmonary embolism? If I step out in this heat and do that execrtion I will not be able to breathe and refused. Neuro won't order IVIG without chest CT. Looks like I am on my own. If it gets worse I am just going to up the prednisone on my own. If I don't get better, I guess it is ER again.

Why can't they treat you to avert crisis? Why do they have to wait for you to hit rock bottom?

As always Annie, thank for you concern. It is so nice having someone to talk this over with. MG makes you feel very alone
kathie

I know, medicine is stupid that way. "Let's see how blue the patient can get before we give them oxygen."

There is such a thing as home health care. Nurses can come to your home and draw blood, if a doctor will authorize it. They can check your D dimer, and even do an arterial blood gas. Good grief, why aren't they being proactive here?

I went to see my primary doctor too soon after my crisis. My breathing was so bad that it affected my heart (showed up on ECG).

I agree about the chest x-ray before IVIG or pheresis thing, but you can wait until you get to the hospital for that to happen! No extra trip necessary.

I know, it feels very lonely to go through a crisis. And after one. The best thing you can do is stay very still, calm, and think of the best thoughts you can. Puppy kisses help, too. But don't be shy about dialing 911.

Kathie, I'm sorry you're going through this. This is the time when MGers need the most support. I know you can get through this.

Imagine a 60 degree day, lying on a cozy chaise on a white, sandy beach, the wind ever so gently grazing your skin, and the sound of waves rhythmically going in and out . . .

Annie

I thought about something else. Duh. Your kidney function is lower, right? I hope they'll keep checking that as well while on steroids. If you might have lupus, someone needs to keep that in mind with everything they do for you!

Shortness of breath started again on Tuesday and I went to ER. They did the chest scan in ER and it was ok. They shot me full of steroids again and breathing eased. I had all over MG weakness, swallowing, eye shut, could not move legs or arms. They wanted to admit me but had no beds. Neuro does not think it was MG crisis, because My shortness of breath lasted so long without needing the Vent. So she refused IVIG and plasmapharesis. I am back home and the overall MG is worse than before. I found 2 new neuros but can't get an appointment right away. I can't believe the neuros logic. Just hanging out waiting for John Hopkins.

kathie

Geez, Kathie, I don't even know what to say. Shortness of breath lasted so long? What the . . .? How do they know you didn't have hypoxemia (while awake and sleeping) and didn't need a vent? Their otherworldly psychic ability?

Again, no ABG? No pulmonary tests? No handheld, bedside spirometry even?

Find a pulmonologist. ASAP. I cannot tell you how valuable they are for MGers.

Does the neuro know that there is no way to predict how quickly someone with MG will tank, or how badly?

I might have to write a e-pamphlet about MG, breathing, and ER treatment. I'm really beyond sick of this.

I hope you're taking it easy and will go back in if you need to. I am so sorry you aren't doing well and aren't getting adequate care.

:hug:
Annie

Last 2 days I have had some improvement. I am able to think about more than getting to bathroom and food to take with meds. The heat is a killer at the moment/ I got a cancellation appointment with one of the neuros, I mentioned. He has numerous MG patients, but not as bad as me. he said my level of MG is beyond his expertise. He suggested a different neuro group, that has a new satellite office just opening at my local hospital. One is a trained neuromuscular specialist. he put a call into him right during the appointment. I am waiting to hear back.

Meanwhile, current neuro tried to taper prednisone on discharge from hospital starting at 80 mg for 1 week and 40 the next. I talked to my primary care and told her I would crash. So I am self medicating at this point. I am still not stable and I will continue the 80 for a couple of weeks and then try 70mg. By that time I should be on my way to John hopkins and let them decide the rest

Annie, How did you make out with the flooding? Is everything OK?

kathie

I am praying for you. Stay strong. It is a daily struggle with MG. I think you really could of even used a round of IVIg's if they work for you. And are you actually trying to taper the Prednisone while you are still in such a weak state? With nothing to back you up, its dangerous sounding. I am tapering only 2.5mg and have Rituxan backing me up. Plus 5 IVIg's next week. Still feeling the taper effects....
How is your swallowing and breathing doing? With the summer heat too it's dangerous for us.