My journey started in 2018. I am a Type 2 diabetic who was having problems seeing out of my right eye. During the visit, the Dr. saw my eyelid lower than the other and taped it open and I could see better. He referred me to a plastic surgeon. I thought, “Wow! I can get a eye tuck or whatever it is done.”
As we progressed the exam, I told her that my eyelids seem to act up when I am tired and I don’t get much sleep and/or at the end of the day when I am fatigued.
She did some blood work which all came back negative. I didn’t think anything about it. I did get a little nervous when she referred me to a neuro ophthalmologist.
He did blood work as well which came back negative. He examined me and said he was sure I had Myasthenia Gravis. He did an MRI of the orbital and chest. No sign of a thymoma. I’m thinking, “O.k. so far so good.”
Next I was to have an EEG and then come back for the SFEMG. I really don’t know why they can’t be done the same day except that it is two different people administering the test. It was on the SFEMG which showed that I have Myasthenia Gravis. The euro ophthalmologist seemed way more excited about that his thoughts about the diagnosis was correct. He referred my to a neurologist.
In December of 2020, I saw the neurologist for the first time. He ordered blood tests which took more than 20 tubes of blood.
Yet again, all the tests came back negative. He explained that I was triple negative, which they call seronegative.
Stay tuned for the next blog installment.