hello. I recieved an email from a family member just a few weeks ago that said are you in the hospital again? I wasn't at the time, but it gives you an indication of my life. I don't have a diagnosis. My Dr has come to many times and said"I know what this is!" but the special test for that disease never shows it. Myasthenia Gravis, Porphyria, Alpha 1 Antitripsin Deficiency. My history is years long. I am 33. had 'asthma' during my young childhood that went away for many years. Until 13-14 or so when I went to dr for chest tightness. was told it was in my head. no tests. Have had IBS symptoms since teen. sudden almost uncontrolled urgency. Severe headaches at 16..19-20 yr dr said I had IBS. no tests. Began taking asthma meds again at 21. no tests. first kidney stone during my pregnancy with my now 8 year old. 2 years later lithotripsy done on huge stone. found after 3 weeks of being told it was a muscle strain treated with pt. Then muscle weakness..functional paralysis. Inpatient, treated with IVIG mestinon test positive no thymoma. Clear spinal tap. possible sero negative MG? Guillian Barre ? months of therapy and i could go back to work. got a bug in my ear was given ativan symptoms returned for another month. ok for a few years. then the breathing issues came on. bad short of breath. given prednisone..severe unrelenting abdominal pain. hospitalized. released. Another reathing episode a month later same story, given pred. but put in hospital for breathing. Abd pain returns. EGD negative. 5 days later released. Had dystonic reaction to phenegran. Saw gi dr said it was a muscle issue and given shot in stomach..now i havd two kinds of pain. refuse to go back. Saw pulmo. though resp fuction tests are off the wall wrong, says its not asthma. Not Alpha 1. Not emphysema. just periods of flares. still breathing issues to this day. Dr will not prescribe pred due to reaction issues. 1.5 weeks ago woke up with severy knuckle pain. swelling. waited a few days went to dr. says all these things have to be related. drew 8 vials of blood. says its autoimmune. doesnt know how to treat cuz of my med issues. no pred. no new drugs cuz i react. did diagnose my Raynauds cuz I had pictures. next appt on next wed. to hear blood results. I hurt. oh said I would be finally referred to Rheum. not one in my area so prob will have to wait. I am in small town MN I will travel anywhere though for answers.