Reply To: Describe the Moment You Were Undiagnosed With MG, but Realized Something Was Seriously Wrong

[Community Member]

I know the exact day.  About 5:30 am on July 25, 2019.  I needed to go to the end of my street to switch the metal pull up gates  (one out and one back in) at the concrete irrigation box  … to divert the west bound ditch water to the south bound ditch  water  to go to my street of yards.  My fingers were too weak to pull up the metal slide (about 18″ by 18″)… so I jiggled right side with both hands  … then left side with both hands … and repeated left side  and right side of the metal slide constantly pulling up and out of the vertical slot for about ten minutes.

Drove back to my house at street end … my legs were very weak, as well as my fingers and sore arms  …  and needed to go back to bed.   It took a couple minutes to turn the doorknob to my front door, as I had no FINGER  GRIP  STRENGTH, to grab and turn the now slippery round metal knob to open my door.

Then the next couple days  …. the eye problems started … when I was driving at night.  Droopy eyelids, two eyes competing with each other to see who was THE BEST, and every street light was a CHRISTMAS STAR with a dozen rays of light hitting my car’s windshield, like the covers of one CHRISTMAS CARD artwork.  It was hard to drive.  Right eye closed, right hand driving car, left hand and fingers holding left eyelid open more to see.

So I called C—- Heathcare. Earliest appointment was August 9th, 2019 with an NP.  For 6 months of C—- and their referrals got NO DIAGNOSIS.  So in utter DESPERATION, went to the URGENT CARE CENTER attached to a hospital.    That first hospital gave me a CODE RED, three PNEUMONIAS,  in their ICU, and a $1400 late night ambulance ride to a second hospital.  Three weeks later, after continued doctors failing me at the second hospital, I was finally diagnosed by a third floor nurse at the SECOND hospital on March 24, 2020.  For EIGHT LONG SUFFERING MONTHS, I got every single MG symptom, and EVERY DOCTOR and REFERRAL, as well as two months in the first two of five hospitals of 2020 failed me.   The first hospital within 30 hours gave me a CODE RED. I died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE OF ANESTHESIA  … given to an undiagnosed MG patient. They did not like my moving, choking, staying on my side, and phegming during X rays  .. so they gave me a sedative OVERDOSE  … to have me stay put for MRI and CAT SCANS …. as they assumed TOO, that I had a BRAIN STROKE or TOXIC METAL POISONING  .. but didn’t.

The third floor nurse recognized all my MG symptoms, as in her career, she had had a couple MG patients on her floor.  She talked the hospital into doing a Neuro- Consult, Thymus test, and three antibodies tests.   I was so SERO-POSITIVE .. that they repeated the tests  … thinking they were WRONG.  I had five days of five hours of IVIG  …. and have been stable and in REMISSION since I left the fifth hospital on BLACK FRIDAY  November 27, 2020.   Taking same dosages of CELLCEPT and MESTINON  … without issues.   They started me on a high dose of PREDNISONE along with STATIN drugs  … and that gave me MEDICALLY INDUCED DIABETES II,  which my new endocrine doctor got tapered  … so that is in REMISSION too.