[Caroline]

My sister and my father were both vaccinated with Pfizer, two days apart in the same facility in the middle of July 2021. By August 1, 2021, they were both showing symptoms of autoimmune diseases.  It was my sister who was diagnosed with gMG.
Prior to vaccination, she was a completely healthy 47 y/o woman. Approximately 6-7 years ago she started cardio workouts 4-5 days a week due to being over 200lbs on a 5’5” frame. She changed her eating habits to healthier options, gradually and successfully lost 25-30 lbs in that time frame. She worked full time and Mom of two very active teens.
She initially presented with ocular symptoms (diplopia, ptosis, nystagmus), “nerves in her head “zapping”, and always feeling tired. She lost weight because she noticed she had difficulty swallowing. Sept 2021 she got to see a neurologist. (Mestinal 60mg was initially prescribed by the family MD. She only tolerated 2 days worth of medication before severe dizziness, diplopia, and tiredness presented.). Neuro MD restarted Mestinal 30mg twice daily, prednisone 10mg once daily. These meds had little effect on all of her symptoms. In fact, her symptoms seemed to change rapidly, usually the next week: worsening of vision, respiratory distress during the night, increase or decrease in saliva production respiratory distress upon walking one flight of stairs, 20 lb loss by the end of September. NeuroMD (in Sept 2021) ordered IVIG x 2 treatments which she finally received at beginning of Dec 2021 and showed no improvement even after 2.5wks. Fast forward to 21 Dec 2021 during a telephone appt NEURO MD ordered her to go to hospital ER due to an increase in gMG symptoms. CT SCANS, XRays, blood work normal. She was sent to MICU due to increasing Carbon levels in her lungs; ventilated via CPAP. PLEX treatments ordered: 5 treatments, two days apart. Received her fifth and final dose today. Internal medicine and thoracic surgery have been consulted and are now looking at surgery to remove her thymus. Has anyone else had an experience such as my sister’s?
How did you/family cope? I’m not feeling good about her prognosis.

Many thanks. Caroline.