In late February my oldest son turned 4. I wanted to have a nice birthday party for him since he was having a really hard time with my OMS. I had promised him that I would be better soon, and he got really upset whenever I would vomit. Before this, we did everything together. Mike's parents were there and my parents came out, so we had a little get together with family and friends for Kaizen's birthday. I'm not sure he was very excited. I remember sitting outside for part of the party. I was right next to the cake that I was dying to eat, but I knew it would make me throw up. Instead I settled for black tea and some veggies.
My sister and brothers came up from California that weekend to see me and help out. Lisha plucked my wild eyebrows and gave me a pedicure. Caleb made some guacamole that felt so good to eat, and Galen helped with the house cleaning and we had some great talks at night when I couldn't sleep.
At this point, when I talked I sounded shaky and as if I was always about to cry. In fact, I would cry for the littlest reasons without being able to control it. As upsetting as it was for me to be so emotional, I think I would upset those around me more when I had these fits.
My cousin had brought over a plastic lawn chair and we put it in the shower and I was finally able to give myself a shower sitting in that. It was a huge milestone in my book. My night sleep was getting longer, and I didn't have to wake up and eat every two hours anymore. The trade-off was that I would have to vomit every morning in the shower, before breakfast. My sister-in-law was pregnant at the time and we noted how similar our symptoms were. It felt good to have someone else understand these feelings. Weird, but I just wanted to feel normal again I guess.
February 24. We dropped Mike off at the airport to go to Denver to work for a month. I was so sad to see him go, since he had been the only constant in this whole ordeal. My mom would then drive me and the boys to Moses Lake while Mike was gone. When we got there, my dad had bought a little cake for Kaizen's birthday. I think he enjoyed that quiet birthday celebration much better.
Being in a different place made a huge difference in my recovery. I think it confused my brain, which was relying on things that it was accustomed to doing. I think "tricking" the brain was really key in my recovery. Within the first week I was taking steps without any support.
Saturday, November 22, 2008
Monday, October 27, 2008
Week of January 27. I guess because I was pretty low in weight I became sensitive to sugar and I think I became hypoglycemic. I was unable to eat: sugar, bread, pasta, white rice, and a big one was anything with mayonaise. If I did, I would get dizzy, shake more, and vomit. However, if I didn't eat something every two hours or less, I would also vomit. It was like torture. My mom told me to eat raw spinach and use cinnamon to regulate my blood sugar. I took cinnamon suspended in honey and I remember it working instantly. Then I would eat a bowl of spinach, leaf by leaf, and feel great! I could not be without a bowl of spinach by my bed for a couple of weeks. Mike's dad would always keep a fresh bowl by my bed, because it was the only thing I was sure I could eat. I woke up every couple of hours at night and ate some before I had a vegan bar to keep me from getting sick.
I think I got down to about 80 pounds within a few weeks from the constant vomitting and shaking. I remember bending my leg up and just seeing a bone with flesh hanging there. When I got dressed to go to the chiropractor, my old tight workout pants were hanging on me.
From my notes, it looks like I was able to sit up in a chair for a bit this week, and was able to walk into the chiropractor's while holding onto someone. At this point, there were up and down days. A good day was usually followed by a bad day, especially if I tried to do a lot on the good day. Outside of not being able to walk or have control of my hands, the worst part was the hypoglycemia. It seems like it was always lingering and slowing down my healing from OMS. But maybe it is an actual part of OMS. Dr. Ray adjusted my T6 to enable me to eat better and lose the nausea. I was always able to eat more right after a visit to his office. Laying down so much would make my back start to hurt and the nausea return.
It looks like I tried to write something on February 1. It is completely illegible.
Week of February 3. At this point, I'm starting to have better motor skills. I can feed myself with my hands and do a sloppy job of brushing my teeth. I can sit up for long periods as long as I have a full back and neck support. Because of this, I can't crawl. (Believe me, crawling would have been a blessing after being in bed as long as I had been.)
I don't know what kind of exercises to do, so I start sitting up at the side of the bed for several seconds without any support but my two arms. I can do this a few times and I'm exhausted. I can move myself from the bed to a chair or wheelchair myself. However, I can't sit in the wheelchair very long because there isn't any neck support.
I don't know the time frame, but throughout this first month I am feeling strange buzzing sensations from the back of my head, like my brain is trying to fix parts of my body. It doesn't sound like it makes sense, but there would be these shooting sensations from the back of my head to my hands and down my back. Its a good feeling, but I'm impatient for things to happen faster. I want to pick up my baby on my own and go walking with my older son.
Week of February 10. I have had OMS for one month. I really thought that I would be done with this within 3 weeks, which was what the neurologist said would be the minimum length of the symptoms. I still cannot walk on my own two feet. However, this week I start to use a walker for short walks. I can also use the wall for support and walk that way for a bit. Below is some video of me using a walker and using a chair to move my body around. February 17-18.
I think I got down to about 80 pounds within a few weeks from the constant vomitting and shaking. I remember bending my leg up and just seeing a bone with flesh hanging there. When I got dressed to go to the chiropractor, my old tight workout pants were hanging on me.
From my notes, it looks like I was able to sit up in a chair for a bit this week, and was able to walk into the chiropractor's while holding onto someone. At this point, there were up and down days. A good day was usually followed by a bad day, especially if I tried to do a lot on the good day. Outside of not being able to walk or have control of my hands, the worst part was the hypoglycemia. It seems like it was always lingering and slowing down my healing from OMS. But maybe it is an actual part of OMS. Dr. Ray adjusted my T6 to enable me to eat better and lose the nausea. I was always able to eat more right after a visit to his office. Laying down so much would make my back start to hurt and the nausea return.
It looks like I tried to write something on February 1. It is completely illegible.
Week of February 3. At this point, I'm starting to have better motor skills. I can feed myself with my hands and do a sloppy job of brushing my teeth. I can sit up for long periods as long as I have a full back and neck support. Because of this, I can't crawl. (Believe me, crawling would have been a blessing after being in bed as long as I had been.)
I don't know what kind of exercises to do, so I start sitting up at the side of the bed for several seconds without any support but my two arms. I can do this a few times and I'm exhausted. I can move myself from the bed to a chair or wheelchair myself. However, I can't sit in the wheelchair very long because there isn't any neck support.
I don't know the time frame, but throughout this first month I am feeling strange buzzing sensations from the back of my head, like my brain is trying to fix parts of my body. It doesn't sound like it makes sense, but there would be these shooting sensations from the back of my head to my hands and down my back. Its a good feeling, but I'm impatient for things to happen faster. I want to pick up my baby on my own and go walking with my older son.
Week of February 10. I have had OMS for one month. I really thought that I would be done with this within 3 weeks, which was what the neurologist said would be the minimum length of the symptoms. I still cannot walk on my own two feet. However, this week I start to use a walker for short walks. I can also use the wall for support and walk that way for a bit. Below is some video of me using a walker and using a chair to move my body around. February 17-18.
Friday, October 3, 2008
January 15. Dates get kind of blurry from here, but during this time I remember family coming and going. Quincy and Mike were there full-time taking care of me and the kids for the first week. Quincy adjusted me a couple of times a day.
At this point, I think I was at my worst. I was unable to roll over, sit up, walk or use any motor skills. My body shook non-stop and I drenched my clothes with sweat from the constant shaking. My eyes could not focus on anything. When I talked I sounded like I was out of breath and about to cry. My hearing had gotten really good, and I recognized people from their shape. I know I was slowly able to eat again, but had to be fed, since my hands didn't work.
Quincy adjusted me a couple times a day, but decided to find me a good chiropractor since he and my dad couldn't be there all the time. He took me in to Dr. Ray's office. I had to be carried and held on the table to keep from falling off. The first day, I remember being there for 2 to 3 hours. Dr. Ray adjusted me, iced my neck, and checked me every half hour. He said that he had a case very similar to mine several years ago. I was so excited and full of questions since apparently this only hits one in ten million people. I can't remember if I asked anything. Quincy did most of the talking.
The adjustments that first day made a big difference. Although I was continuing to shake, I felt much more relaxed in my head, which seemed to be ready to explode since I got OMS. It could have been partly due to the soothing demeanor of Dr. Ray and his cozy office, but the adjustments made whatever was locked up in my brain flow through my body. He scheduled me to come in 2 or 3 times a week after that first visit. I would have to be carried in and out for the first two weeks.
The week of January 20th I think Mike's parents arrived and Quincy and Claudia left. Mike's mom was cooking all the meals, cleaning, and waking up at night to give the baby bottles. I was so upset with myself for not being able to do anything yet. She was working too hard doing my job. Getting upset made my symptoms worse. My appetite was coming back stronger. Probably due to all the good cooking that I didn't have to do. Mike's mom left after a week to go back to work, but Mike's dad stayed and helped. Kaizen really enjoyed that and latched onto Grandpop during that crazy time.
My mom arrived a little before the last week in January. The start of the third week of OMS. She took over where Mike's mom left off, and was also constantly massaging my feet. That felt good. Here are two videos she took of me at the time. One was me trying to roll over and the other is of me trying to drink water without assistance.
At this point, I think I was at my worst. I was unable to roll over, sit up, walk or use any motor skills. My body shook non-stop and I drenched my clothes with sweat from the constant shaking. My eyes could not focus on anything. When I talked I sounded like I was out of breath and about to cry. My hearing had gotten really good, and I recognized people from their shape. I know I was slowly able to eat again, but had to be fed, since my hands didn't work.
Quincy adjusted me a couple times a day, but decided to find me a good chiropractor since he and my dad couldn't be there all the time. He took me in to Dr. Ray's office. I had to be carried and held on the table to keep from falling off. The first day, I remember being there for 2 to 3 hours. Dr. Ray adjusted me, iced my neck, and checked me every half hour. He said that he had a case very similar to mine several years ago. I was so excited and full of questions since apparently this only hits one in ten million people. I can't remember if I asked anything. Quincy did most of the talking.
The adjustments that first day made a big difference. Although I was continuing to shake, I felt much more relaxed in my head, which seemed to be ready to explode since I got OMS. It could have been partly due to the soothing demeanor of Dr. Ray and his cozy office, but the adjustments made whatever was locked up in my brain flow through my body. He scheduled me to come in 2 or 3 times a week after that first visit. I would have to be carried in and out for the first two weeks.
The week of January 20th I think Mike's parents arrived and Quincy and Claudia left. Mike's mom was cooking all the meals, cleaning, and waking up at night to give the baby bottles. I was so upset with myself for not being able to do anything yet. She was working too hard doing my job. Getting upset made my symptoms worse. My appetite was coming back stronger. Probably due to all the good cooking that I didn't have to do. Mike's mom left after a week to go back to work, but Mike's dad stayed and helped. Kaizen really enjoyed that and latched onto Grandpop during that crazy time.
My mom arrived a little before the last week in January. The start of the third week of OMS. She took over where Mike's mom left off, and was also constantly massaging my feet. That felt good. Here are two videos she took of me at the time. One was me trying to roll over and the other is of me trying to drink water without assistance.
My appetite was really taking off, and it felt good to eat ice cream every night. One night I ate cake with ice cream before I bathed and couldn't understand why I was flopping around like a fish on land in the tub. That was the end of sugar for me, and the beginning of a very painful phase of OMS.
Tuesday, September 23, 2008
January 11, 2008 continued. At the first ER the CAT scan came out clean and I received two bags of IV fluid. The doctor suggested a neurologist consult, but we decided to leave and thought I would get better after getting the fluids. We went home after a few hours, and my parents arrived that evening. My father (a chiropractor) adjusted my atlas that evening and it seemed to open up the floodgates to whatever was happening in my brain. I was almost unable to sit up without assistance at that time. My whole body would shake uncontrollably. Still unable to hold onto any food or liquid. Couldn't walk down the hall to the restroom.
January 12. I thought that was my last day alive. I had no strength left in me. I think my mom was trying to get some fluids in me. I remember just laying there having some crazy visions. My husband called a friend who is a doctor that morning. He said that we needed to go to a good ER or I would die. I thought I was already dead with the visions that were behind my eyelids, and my mom giving me a vinegar sponge bath. I asked to say good bye to my boys and then Mike and dad carried me to the car.
We went to OHSU ER this time. I think I got an IV much faster. Neurologist ordered MRI. It came out clean. At this time my eyes were shifting rapidly and my body was shaking non-stop. I am very sensitive to any light and cannot make it to the bathroom from the hospital bed without assistance. My dad, Mike, Irene, Biniam are there. Mom and Quincy are on the way. That afternoon the doctor does some tests on me, and eventually comes in with the diagnosis of Opsoclonus Myoclonus Syndrome. He says that it is self limiting and should clear up in 3 weeks to 3 months without doing anything. It was a relief to hear and I figured I'd be done with this in a maximum of 3 weeks. (I'm pretty healthy and just did a triathlon and a half-marathon.) The first video is from the doctor in the OHSU ER.
From what I can recall, the doctor said that my immunity was down from the stomach virus and my own antibodies that were fighting it attacked my brain stem, where they detected activity.
The first suggested treatment was an anti-anxiety drug (clonazepam) to stop the shaking and eye movement. I think I thought that taking this would make me walk again as soon as I took it. I took one that evening and felt worse. Took a second one, just hoping that the first was a fluke and felt worse again. I fell out of bed trying to make it to the bathroom. I still can't believe that I can't walk.
The doctor also highly recommended a spinal tap to do further tests to see if I had any other problems. This I declined after discussing the pros and cons with the doctor. Intravenous immunoglobulin (IVIg) was also suggested. I also declined this after learning about the side effects and reading about another person around my age who had gone through OMS and taken that route. It seems that the recovery time was increased to over 2 years.
That night I stayed at OHSU. My brother (also a chiropractor) held a pressure point near my atlas and all of the symptoms STOPPED. Chiropractic adjustments were how I was going to treat my OMS.
January 13-14. I stayed at OHSU, but everything was a little blurry. I remember friends and family visiting, but I was only able to see the outline of people at that time. Several doctors came to do the same or similar tests that you saw in the first video, since OMS is pretty rare. More than one suggested a spinal tap, and one actually tried to schedule one even after I declined. I wanted to leave. Although the doctor suggested that we stay longer, my husband got a wheelchair took me out of there. (Thank God!) I had never stayed in a hospital before that. Although that one was nice, I wanted to go home and see my babies and heal.
When I was at home my dad adjusted me and I felt much better. He also did a light massage on my head. He said that my brain was swelling, and the massage felt really good. Later that evening I had visions of thousands of mutilated, dead bodies all around me. These visions were vivid, and there every time I closed my eyes for a few hours. I told my dad and we wondered if it had to do with my brain massage.
January 12. I thought that was my last day alive. I had no strength left in me. I think my mom was trying to get some fluids in me. I remember just laying there having some crazy visions. My husband called a friend who is a doctor that morning. He said that we needed to go to a good ER or I would die. I thought I was already dead with the visions that were behind my eyelids, and my mom giving me a vinegar sponge bath. I asked to say good bye to my boys and then Mike and dad carried me to the car.
We went to OHSU ER this time. I think I got an IV much faster. Neurologist ordered MRI. It came out clean. At this time my eyes were shifting rapidly and my body was shaking non-stop. I am very sensitive to any light and cannot make it to the bathroom from the hospital bed without assistance. My dad, Mike, Irene, Biniam are there. Mom and Quincy are on the way. That afternoon the doctor does some tests on me, and eventually comes in with the diagnosis of Opsoclonus Myoclonus Syndrome. He says that it is self limiting and should clear up in 3 weeks to 3 months without doing anything. It was a relief to hear and I figured I'd be done with this in a maximum of 3 weeks. (I'm pretty healthy and just did a triathlon and a half-marathon.) The first video is from the doctor in the OHSU ER.
From what I can recall, the doctor said that my immunity was down from the stomach virus and my own antibodies that were fighting it attacked my brain stem, where they detected activity.
The first suggested treatment was an anti-anxiety drug (clonazepam) to stop the shaking and eye movement. I think I thought that taking this would make me walk again as soon as I took it. I took one that evening and felt worse. Took a second one, just hoping that the first was a fluke and felt worse again. I fell out of bed trying to make it to the bathroom. I still can't believe that I can't walk.
The doctor also highly recommended a spinal tap to do further tests to see if I had any other problems. This I declined after discussing the pros and cons with the doctor. Intravenous immunoglobulin (IVIg) was also suggested. I also declined this after learning about the side effects and reading about another person around my age who had gone through OMS and taken that route. It seems that the recovery time was increased to over 2 years.
That night I stayed at OHSU. My brother (also a chiropractor) held a pressure point near my atlas and all of the symptoms STOPPED. Chiropractic adjustments were how I was going to treat my OMS.
January 13-14. I stayed at OHSU, but everything was a little blurry. I remember friends and family visiting, but I was only able to see the outline of people at that time. Several doctors came to do the same or similar tests that you saw in the first video, since OMS is pretty rare. More than one suggested a spinal tap, and one actually tried to schedule one even after I declined. I wanted to leave. Although the doctor suggested that we stay longer, my husband got a wheelchair took me out of there. (Thank God!) I had never stayed in a hospital before that. Although that one was nice, I wanted to go home and see my babies and heal.
When I was at home my dad adjusted me and I felt much better. He also did a light massage on my head. He said that my brain was swelling, and the massage felt really good. Later that evening I had visions of thousands of mutilated, dead bodies all around me. These visions were vivid, and there every time I closed my eyes for a few hours. I told my dad and we wondered if it had to do with my brain massage.
Monday, September 22, 2008
OMS Beginning
On January 8, 2008 I was struck with a simple stomach virus where I was unable to hold anything down for three days. At the time I had an 8 month old baby that I was nursing 3 to 5 times a night. The nursing had probably brought down my immunities.
By January 10 I was probably pretty dehydrated and exhausted from throwing up. I was drinking Gatorade and losing it within an hour. Somehow, I was still trying to nurse my baby. Thank God he didn't catch the stomach virus.
On January 11 I was delirious and don't remember much. I do remember trying to crawl into my baby's bedroom the night before and feeling extremely shaky. My husband decided to take me to the nearest ER for an IV. He left our kids with the neighbors, and they carried me to the car. I remember being admitted and laying on a bed for two hours before finally getting an IV to get some liquids. There was a doctor that finally arrived who looked at my eyes which were moving quickly up and down and to the side. He immediately ordered a CAT scan. He thought I had MS.
By January 10 I was probably pretty dehydrated and exhausted from throwing up. I was drinking Gatorade and losing it within an hour. Somehow, I was still trying to nurse my baby. Thank God he didn't catch the stomach virus.
On January 11 I was delirious and don't remember much. I do remember trying to crawl into my baby's bedroom the night before and feeling extremely shaky. My husband decided to take me to the nearest ER for an IV. He left our kids with the neighbors, and they carried me to the car. I remember being admitted and laying on a bed for two hours before finally getting an IV to get some liquids. There was a doctor that finally arrived who looked at my eyes which were moving quickly up and down and to the side. He immediately ordered a CAT scan. He thought I had MS.
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