I am currently dealing with GBS with Miller Fisher variant and here is my story.
On Black Friday 2015, I received more than lower sales prices and heartburn from eating too much Thanksgiving dinner. I got GBS with Miller Fisher Variant. My Black Friday morning started just like a normal morning. I got up and went to work, and the office was empty so I jumped around and made a goofy character out of a broom. I was bored and full of energy, so I acted silly until about 10:30, and then I went home. I am a commuter and I started my 45 min journey home, and I noticed I started feeling tired, but I thought nothing of it. When I got home, I started feeling tired, and I thought I was hungry so I had a chicken sandwich and decided to take a nap.
The nap was strange for me, I am a gym rat, and full of energy. This chick never takes naps, and I slept for three hours. When I woke from the nap I noticed my hands and feet were numb. I got up and I kept ringing my hands, and then I noticed I was seeing double vision. I kept thinking I am just tired, but it was more than just being tired. My problems just kept getting worse, and by 11 o’clock that night I couldn’t walk. My husband and I drove to the ER just to be told that my potassium was low and I had been hyperventilating.
I woke up Saturday morning, and I was still feeling weird, and just really weak. I could not stand up, so we decided I should go to a local urgent care. I went there and they did a large battery of test, and then told me that I could be dehydrated, but I should go back to the ER if it gets worse. We went back home, and then Sunday morning, is when things really went south. I woke up with the worse headache of my life, so I decided I would take a shower. I grabbed a stick so I could walk. I sit down in the shower floor trying to get my sinuses to open up with hot water. I was still having numbness and double vision, but in my mind, I thought hot water will cure this problem. The shower was a bust so I decided to get out of the tub. I got out of the shower, and I found myself laying face down in the floor with my right leg that had a recent injury pointed the wrong direction.
I was very foggy, and I called my husband, and it was like we need to see the ER again. By that time, I was not walking at all, and he basically had to drag me to the car. We had a long drive, and I was just so out of it. When we got to the ER, they rushed me to the back, and started doing all these test. I ended up being admitted to the hospital and being strapped down to a heart monitor. My feet and hands by this time had lost all feeling. My left eye wouldn’t hardly open, and I started having the worst leg cramps ever.
The doctors were puzzled, and I literally became a human pin cushion. I had several lab draws and a horrible spinal tap. My case was then sent to a Nero, and they started me on the magic Imoglobin treatment, and I also received PT. My recovery started out very slowly, but I did start seeing improvement on the third bag of Imoglobin. (I am probably spelling that wrong.) I got feeling back in my feet and hands. I did not lose the numbness and I did not see any changes in my eyes. I received five bags of the Imoglobin and I got to come home.
I was sent home with a walker, but I refuse to use it, and I have a blue cane. I have had to see an eye doctor for my eyes and I am currently going to PT three times a week. We are still waiting to see if I will receive any additional Imoglobin. My life has changed in many ways. I went from running two miles two days before this horrible illness to having issues just stumbling to the restroom. I have lost my ability to balance, and my coordination is gone. I have trouble with words, and I have a time holding my fork and collecting my thoughts. I had to dropout of Grad school, and now I am doing Pre-school work. I have basically lost my ability to write perfect sentences, so please no judging on grammar. I am currently on short term disability, because I cant see and I cant work. This illness has also made me very depressed, because I was very active and some people say I am the life of the party.
You ask how do I think this happened to me. I had been suffering with sinus and upper respiratory viral infection, and I had managed to get medicine, but I guess my body went crazy after I got well and attacked itself in a negative way. I will say this much, I am getting better and I can see small improvements everyday. I am about two weeks out, and my hands are almost back to normal. My feet are still numb, and my eyes are still giving me double vision. I sport a pair of awesome Raybans because light kills me, and my left eye is still partially closed. I work hard with a physical therapist, and I pray this nightmare will go away soon.
Being laid up and sad is not normal for Kimberly.