Long journey

I would like to thank this support group as it has helped me a great deal. It started in 2010 cataracts & double vision then fatigue and weakness. First day on a cruise in Italy got a severe upper respiratory infection. Got steadilty worse after that. One year going to Stanford & two years to UCSF. Stanford doc first said ALS then waited five weeks for EMG told not ALS!! Then put on Mestinon helped but while on five a day had single fiber test & told not MG. Then they said Neuro Sarcoidosis then could not find it elsewhere. Then went to UCSF they ran more MRI's another spinal tap lots of blood work.Then said MG again! On four mestinon a day crashed with extremely low heart rate.Mestinon can cause Braycardia so off that. Specialist at UCSF ran a muscle biopsy neg but says that this is CHRONIC PROGRESSIVE EXTERNAL OPHTHALMOPLEGIA caused by a VARIANT OF MITOCHONDRIAL MYOPATHY. So for all of you without a definite diagnosis there are diseases other than MG that cause the same symtoms.I have very bad double vision ALL THE TIME.Glasses with correction help but not when tired. Right side facial palsy, vocal cord palsy & dysfunction so speaking is difficult and sometimes can't speak. Interferes with my breathing. Swallowing also is affected and often food goes up my nose instead of down my throat. My legs & lower back muscles cramp as I strain to do things. My arms and neck are doing the same thing with steady pain. So my friends look up OPHTHALMOPLEGIA, MITOCHONDRIAL DISEASES AND OCULOPHARYNGEAL MUSCULAR DYSTROPHY. MITO ACTION HAS SOME VERY GOOD INFORMATION. 

GOOD LUCK TO YOU ALL