Hello. My name is Lisa. I am 40 years old. 2 years ago I was diagnosed with Hypokalemic Periodic Paralysis and my symptoms were under control.
I started 6 months ago with new symptoms, the mda dismissed me. I went from walking to cane to walker to wheelchair in 4 months of that time. My emgs/ncvs showed benign fascillations. Negative for ALS. I am getting worse. I can no longer stand at all anymore, take steps and I am getting weaker. I am having more and more trouble taking care of myself because I am so weak and I can barely push my wheelchair anymore. I all the typical symptoms for als,swallowing problems, end gaze nystagmus(for 2 years now) and all my other tests for ms, myasthenis gravis, autoimmune,cancer,graves,etc. have come up negative. I am having a terrible time with this process. My family has abandoned me because they think Im crazy and I have been so depressed I have tried to take my life 3 times. They have me in intensive psychotherapy. 3 times in my life i have almost died from misdiagnosis. once from a freak pancreatitis attack, once from my thyroid shutting down and also from the missing the initial HOKPP diagnosis and my potassium dipping ( i had a heart attack). I am frustrated I have gone through 2 neuros who didnt understand whats wrong with me and stopped wanting to deal with me. I dont know what to do. I have lost my children and my husband in divorce and custody. I am running out of patience. How long does als diagnosis take?