Profile

Name

Bobbi

Nickname

dolphinluv44

Short Bio

I’ve had it for over 30 years, but wasn’t diagnosed until about 3 years. I don’t test positive for the antibodies, so even when my eye started staying closed no matter how much I tried to open it the neurologist just said myelination disease of unknown origin. It was actually my eye doctor that diagnosed me when I came to her frantic because I was having double vision that she said that you have all the symptoms of myasthenia gravis. I went back to my neurologist and he again tested me for myasthenia gravis and the test came back negative again and he said oh you have fibromyalgia. I had watch video and saw how my eyes was doing late in the day…..how no matter how much I tried and you could see the rest of my face moving they wouldn’t open. He then was embarrassed and very apologetic and sent me to someone that specialized in myasthenia gravis. Who is a fantastic doctor. I have been told since the age of 26 by multiple doctors that they believed I had an auto immune disease, but all test came back negative. I have had too many brain scans because each doctor thinks I have MS….when they can’t find the cause of the muscle pain and weakness the have all said: “uh you have fibromyalgia!” Which I don’t have and my boss a medical doctor says isn’t a disease but merely a symptom that something is wrong. But that’s just his opinion he says! If I hadn’t of taken that video I still wouldn’t have the proper medicine that I have needed for decades!

I was an early childhood and special Education teacher until I could no longer stand up all day teaching in 2005. I had to take a job teaching and taking care of young children which gives me time to set down and rest or rest while I’m teaching them. I’m pretty sure my mother had this disease too, but died on a respirator at age 68. She had just had an eye lift because she couldn’t hold her eyes all the way open. Doctors so need to be educated to the fact that 30% of people with myasthenia gravis doesn’t test positive for the antibody test! They don’t even know why?

Year of birth

1959

Gender

Female

Location

Crawforville, Florida

Relationship

Patient

How did you hear about us?

MG Website

How long have you or the person that you are caring for had MG?

30 years, but only diagnosed for 3 years

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