Very Confusing Illness
I started experiencing double vision in 2019. It could get quite severe at times. Went to the doctor and she thought it was vestibular.
My diagnosis journey
She sent me to an ENT specialist. It wasn’t anything to do with balance so I went for an eye test and the optician abandoned the test and sent me to eye casualty.
After three visits, one of the consultants suspected MG. He did the blood test and referred me to a neurologist. Hey, presto positive! I had Ocular MG. Take these little white tablets, cured!
Flares due to stress
I went on holiday to Cuba last July and had a breathless episode whilst checking in due to the stress of a travel agent mixup! Resolved after we got into our room. A few days later one very droopy eyelid resolved after a dose of Mestinon.
No further issues until after a stressful argument with a neighbor left me very breathless and a visit to the hospital where an MG flare was diagnosed. Mestinon increased to 120 mg 5 times a day and 40 mg Prednisone daily.
My current situation
The bottom line is I’m no better. I am still breathless only now I’m 30 lbs heavier, a type 2 diabetic and I sweat like you wouldn’t believe. The neurologist isn’t satisfied it’s MG-driven but I’m convinced.
My diaphragm hurts during the worst breathlessness and my o2 seldom gets over 94%! My heart rate can hit 135 sometimes just walking 10 feet and constantly clearing my chest. Lungs are fine and ECG is fine. Awaiting spirometry but it’s taking ages due to COVID delays.
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