Prolonged Myasthenia Gravis Diagnosis

[Amy Cessina]

I have many friends that are doctors and nurses . They say it’s not taught per se in medical school and nurses  just skimmed over for their NCLEX exam. It’s so rare they may never see a patient during their residency or as a doctor . My son is 30 he just saw his first MG patient ever. It’s not something common, there is no screening and very few doctors are experts with the nerve conduction tests. That’s a highly specialized doctor not found everywhere. Plus symptoms come and go towards the beginning and it’s human nature to ignore it and hope it goes away in its own. That’s why many end up in bad shape.

[John Ulfelder]

My MG came on rapidly early in 2921. My two key symptoms were severe ptosis (droopy eyelids) interfering with my sight and difficulty swallowing. Initially I went to my opthomologist because of my eyelid problem. When I discussed my situation and symptoms with the new doctor in the practice se immediately zeroed in on the possibility of MG and advised me to see a neurologist immediately. I then discussed it with my primary care physician (PCP) and she also zeroed in on the possibility of MG and advised me to go to the emergency room at the local hospital, which also has a large and experienced neurology department. Went to the emergency room, was admitted based on a preliminary diagnosis of MG. Started me on mestinon and sent me home. My condition worsened (mestinon not helping), couldn’t eat or swallow (not even my own saliva). Readmitted, ended up with feeding tube first through nose down throat and then surgically inserted through abdomen into stomach. In hospital for four and one half weeks then rehab hospital for two and one half weeks. Sent home for further recovery and out patient rehab. Also regular appointments with neurologist and ongoing adjustments to medication (prednisone & mestinon). Swallow function returned with exercise. Feeding tube removed. Able to eat and drink everything.

My point is that my local, day-to-day medical practitioners picked up on the possibility of MG immediately and gave me good advise as to how to proceed (get neurological help asap). Perhaps it was because I live in a large metropolitan area loaded with highly trained and skilled medical personnel. Nor did I experience any weakness in my limbs. My symptoms were very clear and focused on my eyelids and throat (no confusion there). What is referred to as bulbar MG.