I have always had a droopy eye lid, even in my elementary school years, but back then it was called a lazy eye. As time went on, I realized at certain times I would have a really hard time breathing but when I went to my doctors, I was just told it was “nothing” because I always had a pulse ox of 99%.
I have always seemed to be clumsy and I can remember my parents often saying I could trip over the flowers on the carpet.
In my early forties, I had a stroke. I had just moved to Georgia and knew no one and definitely knew no doctors. I was assigned a neurologist who was an older gentleman and this is the only time I will refer to him as that. After I got out of the hospital, he placed me in a daytime rehab program for physical/speech/ occupational therapy. I had PT in the morning and OT almost immediately after lunch where I would be placed on the stationary bike and collapse every time. The neurologist labeled me as “lazy, menopausal and possibly crazy” and removed me from the program. I ended up spending almost two and a half years bedridden.
This was deeply humiliating to me as I had an aide come in the mornings that I was dependent on to make me coffee and take me to the bathroom. Sometimes she didn’t show till noon time which meant medications were late, I had no coffee and there was lots of pain from not getting to the bathroom. Then a night time aide would come and luckily she was wonderful to me.
Every time I would fall or have a really rough time breathing I would head off to the ER praying someone would know something but I was always met with dismissal. The neurologist refused to come and evaluate me and would insist I was seeking attention. The ER doctors grew tired of seeing me and were not very nice. I had decided to do a living will, checking off the block for a DNR (do not resuscitate).
A member of my church had the same neurologist I did. She had all the signs of MS but this “wonderful” doctor also wrote her off as being hysterical. Luckily for her, her husband was a pharmacist at the hospital where this neurologist practiced. He had to beg the doctor do a spinal tap on her. The doctor finally agreed and told her the test came back negative even as she worsened. However, she was able to get in with a neurologist who was well known and is difficult to get an appointment with because she was just that good. The next time I had to go the the ER, I went to Candler Hospital where this new neurologist was on board. I requested her care and God was with me in she walked. There she was, the lady who was about to set me up with an amazing team of doctors and actually diagnose me with a week! Amazing, isn’t it, the difference between a doctor who listens and one who seems to think females are hormonal and hysterical. I can never have enough thanks for Dr. Julia L Mikell who has retired now and it breaks my heart. But for ten years she listened as I was panic stricken and became so angry because I just wanted to be human again. She always listened, and was so compassionate and caring.
I went to her unable to take one step on my own and within months walking on my own. I went for so many hospital stays in a year I could have changed my address and now my last plasmapheresis was November 2014! I still have rough days but I can recoup. I have learned when I need to call the doctor and when I don’t. I don’t panic when I have a flare but I do get madder than hell during a flare. I hate losing control. Life with MG sucks.
– Cindy Milloy