Annie - great advice. I wish I’d never started taking prednisone! It’s been 9 weeks and I’ve gone rapidly downhill in terms of MG symptoms. I can no longer walk, have had episodes of limb paralysis, speech slurring, unable to,swallow,shortness of breath, etc.. My Neuro Opthamologist started me on these meds. After 3 ER visits, I was finally seen by a nearby university hospital Pulmonololgist and a Neuromuscular Neurologist. The new Neurologist wants to taper me off the prednisone as soon as my insurance company will approve starting IVIG infusions. It’s taking forever and I fear the approval will not happen.

My symptoms are so exacerbated now that I desperately reached out to both Duke’s MG program and George Washington University’s MG program. Duke can see me in May! I see Dr. Henry Kaminski at GWU on Thursday of this week. My hopes are high and I pray I’m not disappointed. I’m desperate to have a Neurologist who truly understands this disease and will help me live. I honestly feel myself fading fast.