In between infusion,
My Neurologist made a big mistake this year. In October of 2016, my doctor felt the retuxmab would be the best fit for me. Years before, I was receiving IVIG, but of course a blood clot was my bonus. So the retuxmab works.
Now a whole year has gone by and no infusion. When she finally can to a conclusion that she needed to make her move. All of the infusion centers were booked up tight.
My infusion is scheduled for January 17 2018 and I’m slipping fast. A few days ago I went to the ER for a booster shot (125 mg steroid) injection. I felt better for a few days and I know the shot will not last. I’m tired, weak, slurping speech, some kind of flashing hits me then weakness comes and etc. She boosted me from 15 mg of steroid to 40 mg per day (it’s not going to work.
Ok family, WHAT TO DO BEFORE I SLIP IN MG CRISIS?
Hi everyone. I have seronegative myasthenia gravis. I have been officially diagnosed for about 8 months now, but I have had symptoms alittle over a year. I take mestonin and prednisone, along with other medication. I also receive IVIG every six weeks. The past few times, the home health nurse is having a really hard time finding a vein. When she finds one it blows ( I would assume from the...
Just wondering if anyone else has experienced this weird symptom...I'm generally well managed with 10mg prednisone daily and 60mg pyridostigmine 3x daily. However, I have begun to recognize a pattern that if I am pushing myself just a bit too much, instead of seeing definitive signs of weakness, I start sweating profusely.(When I was on high doses of steroids I'd have daily sweating episodes,...