“I’m just going to sit over here by you and I might collapse but I’ll be fine.” That’s what I quickly spouted to the lady at the Farmer’s Market as I stumbled over by her table.
My legs were already bad that day. We needed some fresh produce and the market is only open on Tuesdays. So I warned my kids and we went anyway. Halfway through, my littlest rammed his head in to my leg. That did me in just a few minutes later. We were done with our produce purchases and it was time to let my kids choose a snack item. We were stopped right in the middle of the gravel walkway of the Farmer’s Market deciding which table we were buying the snack from when I felt it coming on. I let go of my littlest’s hand and told his siblings to take him. Then I stumbled of to the side, trying to avoid a big scene.
The lady actually got her chair moved out for me and I got in it right as I lost function.
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One summer day, I went outside to simply get my trash cans from the curb. I pulled them up to my house and I felt my legs get sore and weak. I continued on to my front door, yelled at my daughter to bring me water, and proceeded to collapse in my front yard. My neighbor was sitting out with his girlfriend. He has worked with me and experienced my spells. She was scared. He came over, got the water from my daughter and helped me drink it. He stayed with me for a few moments until I got through it. Then I proceeded on with an active day with my kids.
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We went to Magic Kingdom. Myself, my three kids, their Aunt, and their Dad. We were winding up our evening and went to see Buzz Lightyear. The line was long and of course it was hot. I had been on the go since 5am, hours of driving and then hours of walking already. I was good with drinking my water and slowing down when I had to.
It was our turn! My middle said he has to use the bathroom. I said let’s hurry and get our picture then we’ll go. We had a big group picture taken, then we were about to change it up and get one more picture. All I did was turn too quickly. My kids’ Dad was right by me and I said “I’m going down! I’m going down!” and then I collapsed as he caught me. A worker helped get me over against a fence. I sat there, head down, eyes closed, breathing heavily, begging my arms and legs to move and begging my voice to work. As I willed my body to work, my kid’s Aunt rushed my kids away (she didn’t know they were ‘pros’ at witnessing and helping me through these spells.) My ex husband then explained to all of the rightly concerned onlookers: This is normal. It’s not the heat. It’s something with her legs. Nobody can figure out a diagnosis. When I was able to open my eyes and look up, I saw Buzz Lightyear standing there looking at me. In my head I was LAUGHING because, you know… Buzz Lightyear, to the rescue!
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Since July 2017, I have been collapsing, a lot. In my yard, in stores, at my son’s school because I went up the stairs too quickly… in restaurants, my previous in-law’s home, church, and so much more. When I started noticing the symptoms, I tried to ignore it, and I didn’t tell anyone until a friend was visiting and witnessed it. My feet and legs started to go numb and tingly. So did my hands. By September, I had started working a school and the change in activity proved to be worse. I collapsed two or three times there. Thus began my doctor visits.
I was thankful. The month before, August, my brother had gone through another one of his spells/flares and ended up in the hospital. AGAIN. This time, a neurologist figured out what was going on with him and diagnosed him with CIDP. Awesome! He finally had a diagnosis, was getting regular treatments, and that gave me something to go on. Even though my ‘spells’ had differences, in conversation we discovered the similar feelings our spells caused.
So, I went to my primary care physician. Told her everything and told her that I wanted to be referred to my brother’s neurologist because I probably have CIDP too. She did her part with blood tests and sent the referral. I was EXCITED the day I got to meet the neurologist and even more so when I went to get my nerve test done so that I could get my CIDP diagnosis, figure out my treatment plan, and hopefully get it taken care of before it got as bad as my brother’s. (He’d seen MANY doctors with no clue of his diagnosis for years. So I figured his nerve damage was worse than mine.)
At the end of the test, the neurologist told me I DO NOT HAVE CIDP. I was MAD. How could it NOT be that? My legs were so bad after that EMG that I collapsed right outside of the room. Once I was good enough, I got up and limped all the way through the hospital and to the parking deck.
Back at his office, he wracked his brain for what could cause my symptoms. He actually showed me his computer where he was searching and trying to figure it out. He found ONE thing that somewhat sounded like my symptoms. I was referred to Cleveland Clinic’s geneticist to get tested for that.
Over a few more months… I saw genetics and left them clueless after the TWO things they tested me for came back normal. I had an EEG and an EKG. I wore a heart monitor for a month. I did a treadmill stress test… just barely making it to the minimum heart rate necessary before telling the extra nurses that I needed help off and to the bed.
As I’m sitting here writing this, my legs are starting to go numb. It may continue on for minutes or even the entire day. I’ll still be able to function normally, they’ll just be numb and maybe heavy. I have lived with this for just about 2 1/2 years. It affects my day to day life because I don’t always know when it’s going to happen. Sometimes I can tell it’s a ‘bad leg day’ and sometimes it can come on seconds before I collapse. I have to watch how much I use steps and go slow when I do. I can’t run around the backyard with my kids without mentally preparing to collapse. I try hard to not let it keep me away from things. I made it through a day of walking in Washington D.C. with just taking extra precautions. I made it through Disney, despite one collapse. But there are many days where I can’t continue on and finish this or that because it’s a ‘bad leg day’.
Hopefully one day, somebody will find the answer for me. A name alone would help me so much. Of course, treatment or medication to prevent these spells would be wonderful too. I’m not giving up on finding an answer, someday. In the meantime, I’m enjoying life while occasionally ‘educating’ people that end up freaked out over my public spells.
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