The Beginning
There is no certainty as to when my symptoms truly began. I say this because in 2009 I started to have random episodes of uncontrollable vomiting. I didn’t have the stomach flu and the episodes would last only one or two days. I also didn’t think much of it until I started to have more frequent and unusual episodes. In 2010 I went to my PCP who then stated that I need to see a gastroentologist. I had an endoscopy that revealed minor gastritis and I was told to watch what I eat and stay away from “spicy” food. There were no more vomiting episodes until 2011. I work at a Non-Profit agency helping troubled families and teens. This can be a potentially high-stress job, so when I started to have re-occurring vomiting episodes I shrugged them off as “stress related.”
October 06, 2011
I woke up and got ready for work. I was traveling to a smaller city to help a teen parent find helpful community resources. It had only been about ½ hour into the session when I started to feel nauseas again. I wasn’t sure if what I was feeling was contagious so I excused myself and rescheduled the session for a later date. I drove home as fast as I possibly could because I did not want to pull over on the highway and I knew what was coming. I came home and threw up for what felt like the 5th time that year. I called in sick for the day and took my anti-nausea pills and tried to sleep it off. The next day I still felt nauseas but I also had a throbbing, migraine like headache which I hadn’t experienced before. I couldn’t keep any food down and so I decided to drink some water and just sleep another day away. Part of me wondered if maybe I had caught something from doing so many house visits during flu season.
After about 4 days I was still feeling sick. My migraine got worse; I wasn’t able to keep any food and now any liquid down. I felt weak, fatigued, and malnourished. I went to my PCP who stated that it was just sinus pressure. She stated that I had some fluid in my left ear and prescribed me a 10 day antibiotic. She also informed me that all the symptoms should start clearing up within 5 days but that it was very important to continue with the pills until they were finished. If my symptoms were not better then I needed to come back and see her.
My trip to the E.R.
My symptoms started on a Wednesday afternoon, saw my PCP on a Friday, and by Sunday I was so weak, fatigued, and malnourished that my live-in boyfriend Jon (Firefighter and EMT) stated that we needed to go to the emergency room. The doctor at the emergency room had given me an IV to restore fluids in my system and then ordered a CAT scan because I stated that I was having severe migraines and my PCP had given me some antibiotics for sinuses. The CAT scan revealed what they said was minor sinus pressure and sent me home with a strong pain killer and another anti nausea pill.
My second trip to the E.R
The night after my first ER visit I woke up with a pain in my bladder. I had a strong urge to go the bathroom and yet I wasn’t able to. I woke my boyfriend up and asked him if he knew of any side effects to the medicine I was taking. We then “googled” the meds that I was prescribed and also helpful tips to help your bladder start. One tip was to take a warm bath, but nothing seemed to help me relieve my bladder urge. My boyfriend had to go to the station where he works a 24 hour shift. I called a friend to take me to an Urgent Care because it had already been almost 14 hours and I was still unable to use the restroom. The urgent care stated it was probably a UTI and seemed to not take a huge concern. My boyfriend’s sister took me back to the E.R. that day when I told her it had been over 17 hrs since I last was able to go to the bathroom. The doctor then catheterized me and said that I had an overwhelming 600ml’s in my bladder. I was informed that I would have to keep the catheter in for at least 7 days to prevent infection and that I would have to see a Urologist to get it taken out. The E.R. doctor stated that he believed I was having bladder troubles do to the constant vomiting and lack of liquid in my system. My symptoms were changing but we assumed it was due to not being able to keep down not only food but liquid as well. I still had a throbbing headache and now I would have on and off episodes of double vision, and light headiness. I also started to have tingling sensation in my feet and tremors (body shakes) they were not severe so to me it just appeared that I was too weak to walk “normally”. The E.R. doctor then asked me a series of questions about my new symptoms and said it sounded like vertigo. He prescribed me some vertigo medicine and sent me on my way.
Back to the PCP
The day after my second trip to the E.R. my mom and boyfriend insisted that I see my PCP and find out what is really causing all my current symptoms. They did not believe simple sinuses’ could possibly affect me in such a way as this. My PCP stated that she still believed it was just sinus pressure and that fluid in the ear can cause vertigo symptoms. She did not appear to second guess her last diagnosis and told my mother that she would get me an appointment with an ear, nose, and throat specialist to confirm her theory.
Urologist and New Symptoms
It had been eight days of constant vomiting, migraines, body tremors, tingling feet, and now bladder retention. I called the urologist to set up an appointment and asked if they could see me sooner to take the catheter out because it was just another obstacle in my way. The urologist stated they could see me in three days. During this time new symptoms along with my prior symptoms started to occur such as, now constant double vision, pain in my torso and mid-back, along with no feeling in my lower back, buttocks, and legs. When it was time for me to see the urologist my father picked me up to take me because I was unable to drive myself. When he came into my room to help me out of bed, I could hardly walk three steps without vomiting, I couldn’t see much, and walking was difficult without leaning on him and going very slow. My father asked the urologist for a wheelchair because he didn’t want me to suffer any more or do any more damage by having me walk so far and stand in line to wait for my name to be called. The Urologist was unsure of my symptoms and believed that the E.R. doctor may have been correct about the lack of fluid and took the catheter out. She stated that I need to drink as much as I can even if I wasn’t able to hold much of it down. I also needed to come back to see her if any symptoms change or if my bladder does not start on its own.
Ear, Nose, and Throat
It had been over a week and a half since my first vomiting episode and I seemed to be getting worse instead of better. My PCP had theorized that I had sinus pressure and needed to see a specialist. I had a co-worker of mine take me to my appointment because I was still unable to walk on my own let alone drive myself anywhere. At this point, I had been prescribed at least 12 different medications though I was not taking them all at one time. For me this was getting ridiculous, especially if it was only sinuses that were causing such severe issues. The ear, nose, and throat specialist also did a series of tests on me and had come to the conclusion that I did not have a sinus issue. He appeared “upset” that I was sent to see him because it was clear to him that this was not the issue. I told him everything to this point and asked for his medical opinion. I don’t live in a very large city, but my parents do, 3 hours away and I asked if it was better to seek medical help over there. He said it was better to stay in town because each doctor would know each other and the results would come back sooner than in a larger city. He informed me that he would have his assistant call my PCP and speak to her about his findings or lack thereof and ask her to contact me as soon as she could. I thanked him for his honesty and also for not “medicating” me on something he couldn’t find.
That night I told my boyfriend everything that had been going on. (This was the worst timing in the world to be sick. Not only does he work a 24 hour shift 3 days a week, during this month he had an 8-5 training that lasted for 3 weeks. I am 25 years old and pretty independent so when all these symptoms started to occur and I had to rely on others it was difficult asking so many people to come to my rescue especially because I didn’t know what was wrong and I didn’t want people to see me in such a difficult position.) My bladder was somewhat working, or so I thought. What was happening is something called “bladder retention” my bladder was so full of liquid that some would overflow out causing me to believe I was relieving even when I wasn’t. I had no feeling anymore so I couldn’t tell when I needed to urinate and the first sign was when I had an accident in the night. I figured that maybe I was now drinking too much and my bladder was trying to re-adjust.
Neurologist
After informing my mother about my bladder not working and then over working, the concern I felt from the ear, nose, and throat specialist, along with all the E.R trips she stated that I need to find a neurologist. She feared that I was showing symptoms of Multiple Sclerosis but she didn’t tell me this at the time because she felt I was going through enough. Luckily, my boyfriend’s mom had a few resources in the medical field and I was able to get a referral without waiting for my PCP (who was on leave). My mom called for an appointment and they were able to see me the following morning. I asked a friend to take me the next day because I was still in no condition to drive. The medical assistant asked me a series of questions about all my past and current symptoms. He said my blood pressure was low and was interested that I had been the exact same weight for over a year. I asked him if this was a signal for a possible diagnosis but he did not have an answer. Later, the neurologist came and asked me to walk from one side of the room to the other, knowing this was difficult for me but wanting to see what I was struggling with. He also did an eye exam and several other tests. He then said something that I will never forget, “You are a very complicated case, and you are young with no prior medical issues and no genetic problems. You don’t smoke or drink and take relatively good care of yourself. I do not know at this time what is wrong with you, but I promise, though it may take a long time I am going to find out what is causing all these symptoms.” This was it, for me it was heartbreaking and I lost my strength. I went to my friend and just broke down crying. I was scared that no one would find out what was wrong and I would just continue to deteriorate. She tried to give me words of encouragement but I was just not ready to see the light at the end of the tunnel.
During the next few weeks I struggled with my health, symptoms, and positive outlook. I had a spinal tap, 3 MRI’s (one that included dye), a nerve electo test, and several blood tests. This took several weeks. I was still not working, and had no answers for myself, friends and family.
November 15, 2011
I had what I hoped to be my last neurologist visit with a prayer for some answers. Some symptoms started to disappear and others started to appear. My double vision, nausea, and migraines were no longer, but my bladder was retaining so much fluid I was re-catheterized for a few days then taught how to catheterize myself. My body tremors got worse before they got better, and my lower back pain and poor circulation in my legs and feet were still lingering.
During my neurologist visit I had my mother and boyfriend with me for support. We were prepared for the worst but hoping for the best. My neurologist stated that I do not have Multiple Sclerosis. I have no lesions in my brain and nothing in my blood. I have slight inflammation in my T and C spine which was causing all these bizarre symptoms. He informed me that I have Transverse Myelitis. He said it is a rare auto immune disorder and believes that for some reason my immune system over attacked a virus causing this occurrence. He could not give me any further information that I wanted or even more so, needed. I wanted to know why this happened to me, how this began, how to treat it, and will this happen in the future. The only thing I was prescribed was a 5-day IV cotorsteroid to help with the inflammation. I was then told to start physical therapy to work with leg functioning and was then sent home. I was truly grateful that I did not have MS or NMO but that does not guarantee I won’t have it in the future.
Present Day
I now do physical therapy 3x’s a week. My bladder started to work on its own after 2 weeks of self catheterizing; although I now go 6-7x’s a day maybe more. I am back to work but am only working part time until I get my energy back. I am on no medication and hope to keep it that way. I take vitamins everyday and a supplement called Cell Food that contains dissolved oxygen, trace minerals, plant sources, as well as amino acids and enzymes. I had some intense weeks that tested my spirit but through it all I had a strong support system that I believed helped encourage me to continue day to day. My goals have changed slightly, I still enjoy the job I do working with at-risk teens and believe that my illness may give them some insight onto dealing or living in a difficult situation and overcoming all obstacles. I have always eaten healthy but now I am more aware of what the nutrients can do for my body, and I am also trying out for my local city’s women’s roller derby league. I may not make it into the league but I wanted this before I got sick so why should I let my illness stop me? I still have fear about possible future flare ups but living in fear only makes you weak and if you have this diagnosis you are too strong to quit; trust me I know this because I lived it.