Hey there! I'm new to this site and new to MG but was thrilled to finally find a place to vent! How are you feeling today? I know it's frustrating, but try and hang in there. Were you diagnosed with MG? I know it's scary, but at least this illness can be controlled (if you have a doctor who actually knows what they are doing). I spent 9 days in the ICU for my crisis (couldn't breathe) during which time I was given my IV IG (400 mg or whatever a day for 5 days), blood ( I was waaaaaaaay anemic), and steroids - it made a world of difference. Don't get me wrong - I still have really bad days, and I thought I'd never recover from my thymectomy, but it does, and I did. Did the hospital offer you a picc line? That (for me) worked great! I'm terribly afraid of needles and figured one stick was better that 20. It hurt going in, but I think it's b/c I was just so scared and dehydrated. I'm currently on steroids (60mg.) and Mestinon (420 mg daily) - they have been life savers, though the steroids make me a little crazy sometimes
I did have to have a second round of IV IG before my surgery, though that time it was outpatient; I had the picc put in again though and just went up tp the hospital every night for 4-5 hours for 5 days, plus my doc upped my steroids to 80 mg. for about 2 weeks before the surgery (he was worried about my breathing). The thing that scared me the most was being intubated - that sucked! Sorry to go on and on, but this whole thing is new to me........ Take care! Erin
Quote:
Originally Posted by eeyore2
I feel like I'm cheating on Brain talk, but it seems nobody's out there anymore
I'm propped up in my bed, ****** off about my weekend in the ICU for respiratory muscle weakness and dehydration. I slept most of the day and can't concentrate enough to get any work done.
Walking to the bathroom gets me short of breath and my neurologist hasn't called me back (the covering MD this weekend didn't want to do anything because I'm not officially diagnosed (I'm probable MG), didn't get any worse over my ICU stay (didn't improve either).
I'm now just hoping the IVIG I had on Wed and IV fluids I got this weekend kick in and get things back to baseline.
How do others put up with this crap?
What is the threshold that will get my doc to try something (I'm also on Mestinon, without which I would likely not be breathing)?
My inspiratory and expiratory pressures are down (I was told that I currently do not have much reserve), but I didn't want to stay in the hospital where they weren't going to be doing anything and I couldn't get to sleep. After 3 days they always want to change the IV site and it took 7 sticks to get the one I had anyway. At least this way I won't pick up a hospital acquired pneumonia. The docs agreed, telling me to call my neurologist and he would do something...still waiting for that to happen (not holding my breath) 
I have an appoint at Hopkins in the end of July... I guess I just sit around letting my muscles waste, hoping I don't get a cold until then. |