My MS Story…

     My name is Casey Garcia, I am 27 (soon to be 28) and I have MS. Multiple sclerosis  (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. MS can cause many symptoms, including blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more. These problems may come and go or persist and worsen over time. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. About 25% of people with the condition eventually need a wheelchair.

     In July of 2013, I woke up one morning with really blurry vision in my left eye. I thought maybe I had stressed my eye out from crying, since I had just gotten some bad news about my grandma’s health, or that I simply scratched my eye with my contact lense. I put my glasses on and there was no change, but I didn’t put much thought into it, and continued normal daily life for a few days. After no change in my vision and rising concern from my family, I decided to seek medical attention. 

     Anyone who knows me knows that I really hate going to the doctor, but I knew that this time my health could not be ignored so I went to my local urgent care. I was pretty calm about it, thinking it was no big deal, but (excuse my language) that doctor scared the shit out of me. He told me that he saw something blurry in my eye (I’m thinking “crap, it’s glaucoma, I’m gonna be blind”), but that he did not have the proper equipment and that I would have to go see an eye doctor. I knew the right thing to do was to go to an ophthalmologist, but I wasn’t able to get an appointment right away. I went to a Lens Crafters by my house to see an optometrist, I figured in the very least they would have the right equipment. Glaucoma was taken off the table when the optometrist let me know that there was in fact no blurriness in my eye. I did feel a small sense of relief until he brought up the possibility of a pituitary tumor or autoimmune disease. I had no familiarity with any of that because I had no family history and didn’t know anyone personally, so the “scared shitless” feeling didn’t go away until my actual diagnosis. 

     I feel that it was a lucky thing for me to end up at that optometrist. He was very knowledgeable, thorough, and got me a same week appointment with an ophthalmologist at the Vanderbilt University Hospital. She ran the same battery of tests and I spoke up (for once) asking if something different would be done since I already did these tests a couple days prior, plus she had the results. She ordered an MRI of the optical orbits. I didn’t get a chance to speak with anyone about the results, but was told that I needed to see a neuro-ophthalmologist. I went back to Vanderbilt to see this doctor and was kind of blindsided when he asked if I’d be able to check in to the hospital that same day after a brief exam. After a couple of days in the hospital, a complete MRI  (about 2 hours), a very painful lumbar puncture, and several unnecessary heparin injections I had a confirmed diagnosis of RRMS. I was pretty calm about it, I am not sure if it was my ignorance of the disease or the relief of finally having an answer. At the time all I knew about MS was that Montell Williams, the talk show host (90s-00s), had it. I’m happy to say that after iv and oral streoids, and about a month, I regained full vision. 

     Since then I have had 2 relapses, one in April 2015 (complete numbness pins&needles feeling on the entire right side of my body face➡feet) and March 2016 (extreme weakness in legs). I have been on a few MS medications:

  1. Rebif- I was on this medication for about a year, but new lesions showed up on my MRI 
  2. Tysabri- this medication worked great for me, but being JC virus positive greatly increased my chances of getting PML (a fatal brain infection)
  3. Gilenya- I took it for about 5 months and I saw no improvement in my symptoms plus is caused me a lot of issues with my digestive system. It also has a 3-month wash out period so I needed to stop in order to be eligible for treatment.
  4. LDN (Low-Dose Naltrexone)- a non-traditional MS therapy I requested from my neurologist to help deal with some of the symptoms while I awaited HSCT since I was no longer taking any DMDS

     Hematopoietic Stem Cell Transplant (HSCT) is very similar to the bone marrow transplants that have been used to treat patients with leukemia and other cancers of the blood for decades. As a therapy for multiple sclerosis, the process begins by collecting a patient’s own stem cells, either through bone marrow harvesting or blood draws. Once collected, these stem cells are stored, and sometimes multiplied, in sterile laboratory conditions. The immune system is then destroyed with chemotherapy. Once the immune system has been eradicated, the previously harvested stem cells are intravenously infused back into the patient’s body, where over the course of several weeks they rebuild the immune system, effectively giving the patient an entirely new array of immune cells. This brand-new immune system shouldn’t have the destructive tendencies that led their old immune cells to attack the patient’s own central nervous system tissues, the mechanism that is believed to cause the damage and lesions that give multiple sclerosis its name. 

     It is still in clinical trials in the US (unfortunately my insurance wouldn’t cover it), but is being performed in countries all over the world. I have chosen to receive my treatment in Monterrey, México. I am nervous, but beyond excited to have this opportunity. I know they don’t want to call it a cure yet, but with an 80% success rate of people not having progress or relapses, it’s a cure to me.

     In a lot of Hispanic cultures there is a cucuy (or some other variation of the word) story. The cucuy is basically like a boogeyman who many children, myself included, are/were afraid of at some point. I outgrew the cucuy only to be faced with a big ugly one, called MS, as an adult. I will no longer be afraid, I am willing and ready to fight this monster head on! 👊

•••

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Sent

RE: Bio edit

Casey to Laura Meza

September 13Show Details

My name is Casey Garcia, I am 27 years old and up until 3 years ago life was pretty simple and care free. I was working full-time, playing sports, and studying without any issues. I have always lead a pretty active and busy lifestyle. I’ve loved being involved in sports since I was a kid; I swam, played soccer, basketball, kickboxed, and did shotput. I learned to read at a young age so I started school early and graduated at the age of 16. I attended a medical magnet high school. I was on the honor roll, involved in all kinds of activities, took honors and AP classes. I went to community college full time, worked full time, and cared for my sister. I eventually decided that the medical field wasn’t for me and moved out of state in 2011 to pursue an aerospace degree. My life completely changed one morning in July 2013. I woke up one morning with blurry vision out of my left eye. I didn’t say anything to anyone and kind of disregarded it, thinking it would go away like I had done in the past with other symptoms. (My legs used to go numb in high school when I would run) This time I thought it might just have been some kind of weird irritation from my contact lenses or I had stressed my eye out from crying too much as I had recently learned there was a possibility of my grandma (who is everything to me) being really ill as she had some questionable scans and test results at the time. After a couple of days without change, I sought medical attention, and between the original clinic I went to all the way to my hospital stay, it took a week and 5 different doctors before I finally had some answers. After confirmation between MRI and lumbar puncture results, I had been diagnosed with MS.

 Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.MS can cause many symptoms, including blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more. These problems may come and go or persist and worsen over time. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. About 25% of people with the condition eventually need a wheelchair. 

I seemed to be handling my first year with the disease pretty well and it wasn’t too life-changing back then other than the injections I had to give myself three times a week. It took a few months, but I eventually regained full vision (20/15 with correction). Things seemed to be going smoothly.
In April 2015, while on a trip back home in California for a conference and family visit, I awoke with complete numb, pins and needles, feeling on the entire right side of my body. It looked like the medication I was on was no longer effective, so he promptly switched my medication upon my return. I now had to go to the clinic once a month for a 3 hour iv infusion. This medication also seemed to be working out well so my life seemed to resume normal operations. This also took a few months of recovery, but the numbness went away; even when it was present, it didn’t alter any of my physical ability. 
Unfortunately the medication I was on had a high risk of PML (a fatal brain infection) for certain individuals who had specific characteristics present in their blood…I was one of those people. It would just be my luck that the medication that was doing wonders for me could also eventually kill me. Before beginning a new medication, the previous one needed to be “washed out” of my system. My body did not handle this cleansing period well at all. I began to experience more and more neurological pain, lack of energy, muscle spasticity, and weakness. I became so weak that I eventually needed to use a cane to help me get around. This new medication that I started in January did nothing to change my symptoms, instead adding stomach problems to the equation. My neurologist ordered the round of iv steroids, just as it had been done in the past for the other incidents, and eventually I regained my strength. Although I was relieved of my cane, I was still dealing with all the other painful symptoms. 

In the traditional medical treatments available for MS, I don’t have many options as there are very few drugs available and the ones I have yet to try are either similar to the ineffective ones or would be deadly to me. However, there is hope! …its name is HSCT and it is very similar to the bone marrow transplants that have been used to treat patients with leukemia and other cancers of the blood for decades. As a therapy for multiple sclerosis, the process begins by collecting a patient’s own stem cells, either through bone marrow harvesting or blood draws. Once collected, these stem cells are stored, and sometimes multiplied, in sterile laboratory conditions. The immune system is then destroyed with chemotherapy. Once the immune system has been eradicated, the previously harvested stem cells are intravenously infused back into the patient’s body, where over the course of several weeks they rebuild the immune system, effectively giving the patient an entirely new array of immune cells. This brand-new immune system shouldn’t have the destructive tendencies that led their old immune cells to attack the patient’s own central nervous system tissues, the mechanism that is believed to cause the damage and lesions that give multiple sclerosis its name.years old and up until 3 years ago life was pretty simple and care free. I was working full-time, playing sports, and studying without any issues. I have always lead a pretty active and busy lifestyle. I’ve loved being involved in sports since I was a kid; I swam, played soccer, basketball, kickboxed, and did shotput. I learned to read at a young age so I started school early and graduated at the age of 16. I attended a medical magnet high school. I was on the honor roll, involved in all kinds of activities, took honors and AP classes. I went to community college full time, worked full time, and cared for my sister. I eventually decided that the medical field wasn’t for me and moved out of state in 2011 to pursue an aerospace degree. My life completely changed one morning in July 2013. I woke up one morning with blurry vision out of my left eye. I didn’t say anything to anyone and kind of disregarded it, thinking it would go away like I had done in the past with other symptoms. (My legs used to go numb in high school when I would run) This time I thought it might just have been some kind of weird irritation from my contact lenses or I had stressed my eye out from crying too much as I had recently learned there was a possibility of my grandma (who is everything to me) being really ill as she had some questionable scans and test results at the time. After a couple of days without change, I sought medical attention, and between the original clinic I went to all the way to my hospital stay, it took a week and 5 different doctors before I finally had some answers. After confirmation between MRI and lumbar puncture results, I had been diagnosed with MS.

 Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.MS can cause many symptoms, including blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more. These problems may come and go or persist and worsen over time. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. About 25% of people with the condition eventually need a wheelchair. 

I seemed to be handling my first year with the disease pretty well and it wasn’t too life-changing back then other than the injections I had to give myself three times a week. It took a few months, but I eventually regained full vision (20/15 with correction). Things seemed to be going smoothly.
In April 2015, while on a trip back home in California for a conference and family visit, I awoke with complete numb, pins and needles, feeling on the entire right side of my body. It looked like the medication I was on was no longer effective, so he promptly switched my medication upon my return. I now had to go to the clinic once a month for a 3 hour iv infusion. This medication also seemed to be working out well so my life seemed to resume normal operations. This also took a few months of recovery, but the numbness went away; even when it was present, it didn’t alter any of my physical ability. 
Unfortunately the medication I was on had a high risk of PML (a fatal brain infection) for certain individuals who had specific characteristics present in their blood…I was one of those people. It would just be my luck that the medication that was doing wonders for me could also eventually kill me. Before beginning a new medication, the previous one needed to be “washed out” of my system. My body did not handle this cleansing period well at all. I began to experience more and more neurological pain, lack of energy, muscle spasticity, and weakness. I became so weak that I eventually needed to use a cane to help me get around. This new medication that I started in January did nothing to change my symptoms, instead adding stomach problems to the equation. My neurologist ordered the round of iv steroids, just as it had been done in the past for the other incidents, and eventually I regained my strength. Although I was relieved of my cane, I was still dealing with all the other painful symptoms. 
In the traditional medical treatments available for MS, I don’t have many options as there are very few drugs available and the ones I have yet to try are either similar to the ineffective ones or would be deadly to me. However, there is hope! …its name is HSCT and it is very similar to the bone marrow transplants that have been used to treat patients with leukemia and other cancers of the blood for decades. As a therapy for multiple sclerosis, the process begins by collecting a patient’s own stem cells, either through bone marrow harvesting or blood draws. Once collected, these stem cells are stored, and sometimes multiplied, in sterile laboratory conditions. The immune system is then destroyed with chemotherapy. Once the immune system has been eradicated, the previously harvested stem cells are intravenously infused back into the patient’s body, where over the course of several weeks they rebuild the immune system, effectively giving the patient an entirely new array of immune cells. This brand-new immune system shouldn’t have the destructive tendencies that led their old immune cells to attack the patient’s own central nervous system tissues, the mechanism that is believed to cause the damage and lesions that give multiple sclerosis its name.

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