[art chick]

I had a MG crisis or an exacerbation and ended up in the hospital for the last 5 days getting my IVIG treatments I would have normally received at home.

Woke up 2:30 am Sat morning to voice like Lauren Bacall and flood of saliva in throat. Increased respirations/conscious breathing. Couldn’t lie flat. Took mestinon. Day went rapidly downhill from there after discussion with neuro in the afternoon when I suddenly couldn't get out of a chair or walk at all. Then, I couldn't lift my legs off the couch and we hit the ER by 8pm.

Mestinon dose restricted in the hospital (like mestinon and IVIG are conflicting or the same drug) and choking became the worst it has ever been for 3 days. Kept requesting help and being denied. Choked on meds and all foods. They put me on soft foods and tried to strengthen my throat with exercises from a swallow therapist. Confronted the attending when he finally came to see me and he said he was not being notified and that I knew more about my meds than the residents. Choking ended when dose increased granted.

Breathing: NIF down to -20/-30 and VC down to 1.8 and 2.1 but since ABG’s were fine (and done when I had been on oxygen even though I protested ala Annie!! They said it didn't matter.) , they took my oxygen away. Almost no sleep with flood of saliva and choked on it during the night. On 4th day, NIF hit -60 and VC up to 2.8 and 2.9. Did these doctors learning anything?!!!!!

Walking: hip flexors are very weak PT said it was causing my balance problems even though some other muscles were gaining strength each day. Neuro said I was suffering from a lack of confidence if I couldn’t walk.

Cause? Wondering about given a 30 mg dose of pred for an MRI the week before. I am very sensitive to changes in pred and there was no taper. I was told it was one day so it shouldn't be a problem but a 2.5mg drop last Fall put me into an MG tailspin on my usual regimen and there are new underlying undiagnosed issues cannot be helping with some kind of peripheral neuropathy type of thing going on too.

I am gaining strength very fast now with IVIG coming on board but I am using a walker and needing assistance with balance even with that still. Each day is way better than the last. This was a massive crash and with the frequent IVIG I receive (5 days every 21), I am sure my neuro is going to be in shock when he is back from vacation next week. How can this happen? Could it be the pred thing? What are your thoughts on things that went on in the hospital? I would love to hear from you guys and how you have been treated at the hospital.

debra