not doing well
 

So, just to re-cap.
After several tries to adjust mestinon my neuro finally talked me in to 12 day pred therapy which finally kicked in after awhile but then I got pneumonia because my immune system was down and was around my daughter who had " just allergies", according to her Dr. Anyway, the pneumonia brought me back to square one. Then the pneumonia was better according to xray but my breathing continued to get worse. She said it was the MG and put me back on another round of pred. It helped alot and Ive been doing....well y'know....good as we get....until Wednesday...I went outside to tell my son something... Not even 5 mins in the heat, but it was enough.
Now I can barely stand or walk and Im very short of breath. Neuro increased my mestinon again and said to try until after holiday and call Tuesday. If Im not better he wants to admit me for IV of steroids. Have any of you had this? He also mentioned trying IVIG. Another thing. How can they tell its the MG causing the breathing probs and not pneumonia?

Last November my neuro put me in the hospital for high dose of steroids by IV. They need to monitor your blood sugar while doing this because it can spike. I don't have diabetes, but over the course of the 3 day treatment it did spike several times and they had to give me a insulin shot about 3-4 times. Anyway, the treatment didn't work and actually I got worse -- experienced chewing and talking problems which I didn't have before. Then he ordered plasmapheresis every other day (up to 5). Also moved up my thymectomy to do after the plasmapheresis and while I was still in the hospital. It had been scheduled for the following month. I went into the hospital expecting to be there for 3 days and ended up staying 12 days.

I'm doing well now -- just take 30mg of Mestinon 3 times a day. Tapered off Prednisone from December thru April. The only "symptom" I sometimes still have is twitchy eyes from time to time. I'm dealing with the heat so much better than I did last summer. Don't know whether this is considered remission or not, but I'll take it.

Are you on anything other than Mestinon? What about Prednisone?

Hope you can avoid the hospital, but sometimes more drastic treatments are needed. Good luck.:hug:

Draggin, Six years ago, I had my 2nd most horrific medical experience in a hospital on Memorial Day weekend. It wasn't my MG but something else life threatening. I could not have nor would I have stayed at home. No, there aren't as many "regulars" working during a holiday but that should NOT keep you from an ER when you are as weak as you are describing. Saying a patient should wait until after a holiday for help is, in my opinion, unethical. If your MG is tanking, there is no way to predict how bad it will get or how quickly.

If you can't lift a limb, or take a breath in or out well or feel significantly weaker overall, you should go in.

Sometimes it's not very easy to tell if it's the pneumonia or the infection making MG worse. Doesn't really matter. If you can't breathe well, you can't breathe well. They can redo an x-ray, run an arterial blood gas, check your O2 saturation, do a clinical exam and do pulmonary testing. All of which could completely wear you out.

I would always err on the side of caution with MG. If you think that you can rest completely, stay really cool and be okay/improve, then stay home. But if you feel for one second you are getting worse, go in.

I hope you get better. It takes me no more than a minute in the heat to get worse. Stay out of it!!!

Annie