Originally Posted by Tracy9

Really sick; can't get out of bed, move, sleeping all the time. Missed my appt with neuro yesterday becuase medical taxi computer system went down and they lost all thier appts. Coudln't freaking believe it. Called him and told him how bad off I was, he sent me to hospital. CAlled ambulance, heart rate was 140 when ambulance got there and O2 sats were low. Hospital not too helpful but at least this one herad of the disease.

They did spirometry? kind of pulmonary test, just that one, and sent me home based solely on that. They said it's a good test and can predict if you are going to crash or not. Whole time in ER I couldn't walk unassisted, couldn't get my shirt off on my own for johnnie, etc. They did not do any blood gases. Some blood work but no idea what, urine test. Had me count only got to ten. Could not squeeze fingers well, etc. When they d/c me they told me to go to waiting room well it was a loooong walk. I had no idea. I thought I was going to collapse. My legs were full on shaking, kept falling into wall, wobbling, almost in tears, thought I'd just sit on the floor, long hall and no one around as it was 3 am. When I got near the end no one offered me help; they must have thought I was a drunk. It took me forever to reach the smelly couch in the waiting room. I thought, this is my LOWEST POINT EVER. Not one person offered me assistance though clearly I could barely walk.


The ER gave me a month supply of Mestinon, 3 times a day. Now if it helps you in the short run, do you take it before bed? What would be the benefit of taking it while you are sleeping? I took one before bed and two today and no improvement at all. I am TOASTED. I can't stay awake, still every part of my body is extremely weak beyond belief and all I want to do is sleep. I don't have the strength to open a water bottle or lift my laptop.

Is it every 8 hours if 3 times a day? Or 3 times throughout your waking hours? I have to reschedule with neuro but also got an appt with MDA clinic ready to be scheduled now, I think. I think my neuro is sending them all his records so I'll be good to go. He is moving to CA so I need to find all new providers, and it looks like a good place at New Britain Specialty Hospital with a whole MG clinic, 2 docs and services there.


I am so discouraged that the ERs are clueless. I feel unsafe and hopeless that I have nowhere to turn when in bad shape. The ambulance gave me oxygen and it helped IMMENSELY. I wish I had that at home. I asked for it in the ER and they never got around to giving it to me. Does it help any of you? I wonder if I can get that at home. What a huge help that was.


No one in the ambulance had ever heard of MG, neuro in the hospital had but they said if they admitted me all they could do was give me a dose of IVIG and that was it. They said once I just rested the weakness would resolve. What? All I do is rest. It doesn't resolve with rest at all!!! What is wrong with me? I'm always weak and can't even get up alone. I have IVIG Mon and Tues but we are expecting another huge storm Tuesday. I missed it this week because I was far too weak to travel to get there. That sucks, I never ever miss IVIG.


This is scary....no one gets it. I even brought in an article on MG that Annie posted and they all read it and said it was very helpful.

So that's what's up. I'm completely weak today, in pain, exhausted. I can count to ten. Need to call neuro and reschedule on Monday. I was up all night in ER so slept all day and I've been ready to go back to sleep ever since I woke up. Any help about the medication or insight would be much appreciated.