What is AFM?

AFM (acute flaccid myelitis) is a very rare neurological condition. It's considered a non-traumatic spinal cord injury. It is known to affect the nervous system of the spinal cord, specifically the gray matter which causes weakness in the muscles and and reflexes in the body to become weak. 90% of cases affect children. As of 2014, there has only been 670 confirmed cases. This condition is not hereditary. Professionals have detected coxsackievirus A16, EV-A71, and EV-D68 in the spinal fluid. Patients were tested negative for polio virus, although they experience polio like symptoms. [CDC, 29 December, 2020]

My story:
The day I was affected was 4 November, 2019. My symptoms were a bit strange. I felt tingling in my feet and thought it was sciatica pain going up my legs. As the day went on it crept up my knees. Luckily I had called a friend to hang out with me that day, usually I would be alone. Her and I got dinner to go but as we were ordering my numbness crept up to my hips. I went to the bathroom, and I had no idea if I had urinated or not because I had lost sensation from the hips down. As we started to leave I could no longer feel my hands.

My friend recommended that we go to the emergency room as I told her it's probably just a pinched nerve and I'll be better in the morning. But she convinced me, luckily. As we drive home I send a quick text message to my mom telling her that I would be going to the emergency room for what we thought was a stroke. I began to I have a difficult time breathing, and started to vomit in my friends car. Huge mess! By the time we got to my house, my friend had to pull me out of the car and drag me into my house. I was paralyzed from the chest down. She changed me and got me into clean clothes, and took me into the ER. I was taken in by wheelchair, and had no clue what was going on!

We were laughing and kind of silly because I had no control of my body. I would randomly flinch and my arm would fly up into the air or my leg with tremor. The hospital ran test and could not find anything abnormal, so they kept me in the hospital to monitor me. Approximately two hours later, I'm screaming and crying for the nurses to help me. It feels like my spine is on fire, like someone hammering a chisel in between each spinal column. I cried and told them that I was in pain and cannot breathe. They hooked a oxygen up into my nostrils through a tube. I can no longer sit up. I felt shocking pain from my feet to my torso. It was worse than having a child! Next thing I know, I'm laying down and sending out energy into the universe. I repeat myself that I had been a good mother, that I wish my children a happy and successful life, and that I love my family very much and would have done anything for them.

I blacked out. I briefly woke up, but I couldn't speak. Doctors were flashing lights in to my eyes. I could blink. I could hear. I could not move my head. I heard nurses saying they cannot get a hold of my parents, so it must have been the next day. The doctors kept asking me if I could hear them, but I cannot respond because I had been intubated. I tried to think quickly, I started to blink my eyes at the doctors. They would ask if I could hear them, I blink hard once for yes. I asked me if I know what's going on, I blinked hard twice for no. Luckily, the medical team call on to how I was communicating.

I black out again. I was in a coma for one and a half weeks. I heard conversations in my room but could not wake up. When I finally woke up, I was alone in my room. I still cannot speak. But I can move my mouth. I noticed tubes and wires all over me. I had a tracheostomy, I woke up to my mom telling me to wake up and then I had to get a tracheostomy in or I would die. For about seven weeks, I stayed in the ICU unable to speak to any of my friends or family or eat. I had a GJ tube in my stomach. After seven weeks, I was transported to a rehabilitation center in a different state that worked with what the medical team that I had – guillian –barre syndrome.

After a couple weeks of staying at this hospital, I was transported to a different local hospital to stay in there ICU to get more testing done. The neurologist diagnosed me with AFM. I received five days of antibiotics and steroids and 15 days of plasmapheresis. After these procedures, I was sent back to the rehabilitation hospital for further care. I spent three months out of my home state. Unfortunately, they were unable to care me or get me off my tracheostomy. I was sent back home to a rehabilitation center in my home state. From here, I went back-and-forth between rehab centers and ICU use at the hospital due to illness, infections, or complications. In the first four months I lost 30 pounds, I was fed by tube for three months because I was unable to swallow. I had lost so much muscle mass because I was unable to move.

Near the end of my days at the hospital, I had gained some sensation down to my shoulders and movement in my neck. I stayed in the hospitals in Kansas for almost a year and a half. When it was finally safe for me to come home, I had to sell my house and move in with my parents. They had to purchase medical supplies for me to be able to adapt. I was given a wheelchair luckily to be able to travel around.

When I was getting tested for this condition, doctors cannot find any antibodies for any of the viruses. I was asked if I have ever received a flu shot because it can cause trauma, but I never did. Doctors aren't sure as to why I have this condition, because it's not genetic nor is contagious. I am a medical mystery. I am the first adult to be diagnosed with this condition in Kansas City, although I was in Nebraska when we sent my information to the CDC to be tested. Some secondary symptoms I have to watch out for is atelectasis, pneumonia, uTIs, muscular dystrophy, scoliosis, vertigo, foot drop, bedsores, and joint contractures, neuropathy pain, and autonomic dysreflexia.

Since there is currently no cure for this condition, I am doing physical therapy often to help me teach my nerves how to move and to maintain as much muscle mass as I can. I can now eat normal food, although all the medication I am on it is difficult to find appetite. I am currently attempting to go to the holistic route, as I have had a medical team for three years now hi mamas and still no answers. I tried to make all the progress I can, and appreciate every little thing that progresses physically. Mentally this is very hard for me, but I've been able to keep a strong head on my shoulders do you this journey. I'm learning how to adapt, but also not giving up.

If you want to help out with my care, I have an Amazon wish list of medical supplies and things I need for my daily care. If you would like to donate to me, please message me.