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.


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.