Story about Moyamoya .

Diagnosed at last

Jan 22, 2023

By: Sharon


I can't remember a time a didn't search for the words I wanted to say, but couldn't. I knew them in my head; however I couldn't say them or the words would come out jumbled together. I can remember from being a small child feeling like someone was holding me down and I couldn't move paralyzed not knowing what it was believing it was normal. Never spoke of it to anyone because I thought it was how everyone was. I struggled in school especially when I knew the answers until it was test time and I would go completely blank when I knew all of the answers before, but again I thought it was completely normal. I thought it was normal to studder at times or be confused on where I was. This was just life for me. I grew up like this and went into adulthood like this because I thought this was normal. When the majority of the migraines started I thought that was just something I inherited from my mother because she had them so I just learned to live with them. But the confusion became more pronounced and the blackouts came or what I thought were blackouts, but now I know were me fainting. As I aged it just became worse and worse by the time I was in my early 30's I had fainted and fell down a flight of stairs. Still I had no idea what was causing these spells. Believe it or not the doctors still had not done an MRI on my brain just a CT and kept saying I was fine. At this point I was so confused I couldn't even find my car or recognize where I was at times, but I persevered on. You may ask why. I was a single mother of a small boy so I had no other option but to work and put food on the table, clothes on his back and to make sure he was taken care of. I went on for another 10 years before the migraines got so bad that the doctor I was seeing said I was going to have to stop working. I fought this for 2 more years. Then came the Social Security Disability fight of my life for almost 4 years. I finally was able to get disability after being denied 3 times the judge finally approved me for hemiplegic migraines because that was the only diagnosis that they had come up with at that juncture. I am thankful for that one at least because that got me on seizure medication which without it may not have warded off seizures for the last eight years. So fast forward to January 3, 2023 I was in Marion, NC getting ready to leave for home walked in my camper for my last walk thru and started having a stroke my husband called EMS and a camper next to us happened to work in the medical field and if not for her I believe I would have died that day. She was my guardian angel sadly I don't even know her name. EMS got there within 10 minutes got me to McDowell Hospital and within an hour they had diagnosed me with Moyamoya Disease and advised me I had a subarachnoid hemorrhage stroke which they were not able to care for me. I was being transferred to Mission Hospital in Asheville, NC. Within 30 minutes I was in Mission Hospital. It was here I was admitted and my diagnosis was confirmed the next day with an Angiogram through my femoral artery. I was in the hospital for 2 days and sent home to go to Duke for further care. I go back in February to follow up with brain surgery. I can't say I am not scare as I am; however I know now what is and has been wrong with me my entire life. I am also extremely excited at the possibility of what is to come.

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