- Myasthenia Gravis
- Interviews
rhondaw64's interview
How did all start?
I woke up with severe double vision one day in July 2016 and got someone to take me to the eye doctor. After examining me more thoroughly than he ever has, he said I needed to go to the ER right away - something about an issue with the 3rd cranial nerve. I was admitted, became progressivly weaker, until my airway collapsed within 48 hours.
Looking back now, I probably had MG for at least a couple years, possibly more. The symptoms could all be blown off in my mind because I sat at a desk for up to 10 hours a day, didn't exercise, was at & now past 50....
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was diagnosed with generalized myasthenia gravis in July 2016. I think it took a couple weeks to a month to get the lab results (seronegative), but the fact that I was apparently completely calm and peaceful when the breathing tube was inserted and my reaction to the ice pack gave the doctors an early lead.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology, neuro-optho. Previously treated by allergists, cardiologists, orthopods.
What has been the most useful thing for you so far?
Plasmapheresis
What have been your biggest difficulties?
Many recurrent infections while vent weaning.
How has your social and family environment reacted? Have your social or family relationships changed?
My sisters cared for me full time from July 2016 until May 2017 and that actually was a mostly positive result. Social relationships (mostly work) have dwindled significantly first because I was unable to drive, now because of finances.
What things have you stopped doing?
Working, walking without concern, leaving the house every day.
What do you think about the future?
I want to have a future, but I have no idea what it might be.....
