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My name is Stephanie and I am a 20 year old college student at Texas A&M University where I am entering my Junior year with a major in Biomedical Sciences. I love learning and am very proud of the almost 4.0 GPA I was able to maintain until I became sick about a year ago. I have always been a lover of medicine, and health and have spent my fair share of TV time with TLC and The Discovery Health Channel over the last 17 years or so. I used to be a very active young woman, participating in both competitive cheerleading and attending a performing arts high school where I focused in Musical Theatre. I used to be a fun, spontaneous girl.
Starting in July of 2008 I started experiencing sharp pain in my back (next to the spine) one weekend. I had never had kidney stones or a kidney infection but based on my knowledge of anatomy and medicine I went into an urgent care clinic. The doctor who saw me ran labs on urine, and did a full exam where he noticed I had some ulcers in my mouth and in my nose. My doctor asked me what those were and I responded assuming that I had Coxsackie virus since I had been feeling a little fluish but didnt seem to have a fever. He kind of smiled and laughed a bit at my conclusion. Too much Discovery Health for me, he probably thought. Well after his exam he told me he thought I was having the onset of a shingles attack. Yes, that’s right he was diagnosing me, a 20 year old with shingles. He prescribed me anti virals and sent me on my way. I never ever developed any other symptoms of shingles.
I entered my sophomore year that fall and things were going great despite a 17hr heavy course load of organic chemistry, physics, and calculus. In September of 2008 I started experiencing some very odd symptoms. At first my eyes started to hurt when I would move them side to side. Soon I felt very dizzy all the time and was constantly feeling nauseated. This is when I first went to see a nurse practitioner in my college town. I felt very ill and was feeling clammy and shaky. She thought that I probably had some sort of fluid or salts in my ear causing some kind of vertigo problem. She performed a test where she would sit me on the table and then lay me back real fast hoping to get a result from laying me down. Instead of reacting from that, I sat up and started feeling very sick. I started sweating and feeling dizzy and nauseous. After weeks of feeling sick and tired I was sent to an Ear Nose and Throat doctor who determined that my ears were completely normal, but gave me two shots of steroids and told me it would clear up eventually.
I actually just realized that around this time I went to another urgent care place in college station because of problems breathing and coughing. When he listened to my chest I remember him saying he heard lot of rubbing and that it sounded terrible... maybe that will be a clue for later on... (sorry I get sidetracked)
I finally became better from my supposed "viral bout" and was back on my way to finishing the semester, though I was extremely exhausted. At the end of the semester I went home to Houston Texas for my winter break. I was feeling unusually tired and sick, but I tried to continue with the festivities of Christmas. Right around Christmas, I started to have chest pains. I felt like a knife was stabbing into my rib cage, and like a heavy book was lying on my chest. After a few days of this persisting pain I went back to the original Urgent Care clinic that had previously diagnosed me with shingles. I was very scared, because I was very worried I was having some kind of heart problem. The doctor I saw was like a robot, answering questions like a dictionary and treating me like I was a hypochondriac. After an EKG and X-Rays she determined that I had inflammation in my lungs and I was experiencing the pain associated with pleurisy. She injected my with a steroid shotand some ibuprofen. I went home and eventually the pain went away and the winter break came to an end.
The spring semester started and I was feeling very tired and out of it. I had several occasions where I went to the doctor complaining of viral like symptoms and I just feel plain awful. Then in February of 2009 I got Influenza B and was knocked out for a week, missing all of my classes and three exams. Just as I was recovering from the flu I noticed my throat still hurt and didn’t seem to be getting better. I went to the nurse practitioners office and they tested me for strep, and what do you know, it was positive. I was completely drained at this point. Even after a round of antibiotics, I just couldn’t get out of bed. My body ached all the time, and I was always taking a nap. My grades started to suffer, and attending lectures became infrequent. Being the medically educated student I was, I refused to accept that I was just feeling the after effects of being sick, and I started doing some research.
After hours spent searching the internet and medical message boards, I came across Hashimoto’s Thyroiditis. I read the symptoms and realized how much I sounded like what I was reading. I ran to my parents and asked my dad if hypothyroidism ran in our family, because I remembered my dad had to take medicine for something along those lines. The moment he said yes, I knew I had found my answer. The next day I called the old faithful nurse practitioner and made an appointment to get blood work done.
When I came in for my appointment I was carrying a pad of paper and a list of symptoms. I told her I thought I was hypothyroid and then listed several symptoms including low blood pressure, dizziness, and shortness of breath, weight gain, fatigue, malaise, and confusion. She agreed to test me and added a few routine blood tests to the list. A few days later I got a call from her nurse that all my blood work had came out normal accept for my ANA levels which were at 1:160. I ran for a piece of paper and a pen, but by the time I got them, the conversation was over and I had no idea what was going on. I started researching immediately and realized the next step, even before the nurse practitioner returned my desperate phone calls, was to see a Rheumatologist.
To get me in faster, my nurse practitioner scheduled me to see a nurse practitioner working at a Rheumatology office. My appointment included a history of symptoms, which at the time were not that varied, but still included developing joint pain, and even more increased fatigue. I told her that I had a feeling it was Lupus, but I had no real hard evidence behind me except for one lab result, a bad memory of doctors appointment, and an internal instinct screaming the answer. The nurse practitioner ran a set of labs to find more answers.
My follow up appointment two weeks later was more than a joke. The actual Rheumatologist saw me this time and went straight into reading my labs straight off the paper. Negative for Sjoegrens. Negative RA Factor. Negative C3 and C4 levels. Negative Anti-Sm and Anti-DNA. Positive ANA of 1:320. Oh and by the way, your Epstein Barr Virus levels are really, really, high and we think you have Chronic Fatigue Syndrome or Chronic Epstein Bar Virus. I was immediately sent away with a copy of my labs and the instructions to find an Infectious Diseases doctor. I tried to explain to them that I had already had Mono in the past when I was in high school, but they were convinced on their theory of EBV.
I was panicked and scared and I cried the whole way home. I couldn’t sleep. It was about this time things started getting really scary. One day I noticed how my arms, and legs, and even fingers would jerk and twitch. At first it was small, and only noticeable by me. I tried to describe the experience to my family but my vague knowledge of the matter made for a very inaccurate description. I called them “twitches,” which I now know is completely different than a jerk. I made an appointment with an Infectious Disease Specialist in the Houston Medical Center and took manila folders of labs and my own notes.
Over the next couple of weeks the devastating dizziness and motion sickness returned (which would later leave me incapable of driving a car for over a month) and I couldn’t even ride in a car without getting sick. I told the next doctor I was scared I had chronic EBV, and handed him my labs. He took one look at them and threw them away. Literally, he threw them away in the trash can. He said, your EBV panel shows no active disease, but only results of someone who had mono in the past. This was the first time I learned the lesson that doctors weren’t always right.
I told him about my “twitching” and he immediately ordered a brain MRI for that day at the Methodist Hospital. I guess my ignorance saved me, because at this point I wasn’t even thinking about the very real possibility of having something as scary as a brain tumor. I was however worried about Multiple Sclerosis; I thought the twitching meant it was true. He prescribed me a sedative for my anxiety and insomnia, and told me he would do further testing for Lyme’s Disease and Sarcoidosis, an autoimmune disease.
The MRI was loud and reality really set in when I was laying in a tube of magnets. A brace was placed around my head so that my brain would be perfectly still for the pictures. I was feeling claustrophobic in the small area, but was reassured by the tech that the head brace had a mirror attached so that I would be able to see out the tube and into the room. Looking at the mirror was very reassuring, as I could see nurses passing by and the tech rolling back and forth from computer to computer in the control room. The MRI started and I zoned out listening to the banging of magnets, all the time watching my legs jerk in the mirror connected to my head brace.
My follow up appointment was a relief. No tumors, no lesions, negative lab tests, and no appearance of anything wrong. At this point though, my jerks were becoming so bad that my leg would kick out while I would sit on the exam table. I cried and my body jerked while the doctor told me he was going to refer me to a neurologist for further testing. He happened to share an office space with a neurologist and I was booked to see her the next week. Next week could not have felt like any longer. I was a wreck. At this point my muscles felt like they were giving in and my right leg seemed to go weak when I was walking. I ran into everything and lost my balance often. My right foot even started to drop down and sometimes drag when I would walk.
The next neurologist I saw was interesting to say the least;horrible bed side manner and lack of empathy were all this socially challenged doctor seemed to have. She did what any other doctor would have done with a person presenting themselves, as I was: order a full work up to check for demylenating diseases. They arranged for appointments to be set up for Evoked Potentials, EMGs, EEGs, and a Spinal MRI. I was scheduled to return in a couple of weeks after all the appointments were completed.
My testing day at the medical center was awful. I was shocked with electrodes, jabbed with needles, and injected with contrasting fluid. I was preparing myself for the worse scenario. I expected lesions to be found and my life to end with a diagnosis of MS. But surprisingly it didn’t. All tests returned normal except for findings of mild scoliosis and degenerative disks in my spine. I was MS free and to my doctor that meant I was completely fine. I would get over my “benign jerking” and my chest pains, fatigue, and other problems would go away as I got older. I was livid.
I started having tingling in my hands and toes. They would go numb and fall asleep but I could never wake them up. One night I stood up and my vision went black and my ears started ringing. My heart was pounding so fast and I couldn’t see or hear anything. The next day while I was reading my eyes diverted from the page and began jerking and shaking side to side. I knew there was something wrong.
I immediately scheduled an appointment with a new neurologist and began analyzing each lab test I had. After reviewing my labs and researching results online I was able to come to the conclusion that my original thyroid levels were overlooked. My TSH level was border line and I knew according to the new Endocrinology standards that my levels were well above normal while still within lab limits. I knew I was hypothyroid.
I saw a new neurologist who immediately requested a spinal tap be done and I requested my thyroid levels to be rechecked. He also identified my jerking muscles as myoclonic jerks and wrote me prescription for Anti-Convulsants (which I am assuming the other neurologist just completely overlooked).
After the spinal tap I became very, very sick. I got a spinal headache and horrible back pain up and down the sides of my spine and neck. I became dehydrated and ended up in the Emergency Room. The morning I went to the ER I was the worst I had ever been, crying, screaming, and hurling into a trash can. I yelled so loud the entire ER must have heard me. I was hyperventilating and was so uncomfortable that I thought I could not go on living in this much agony. Soon the drugs wore in and I was sent home with a pounding headache and a couple of prescriptions. The spinal tap turned out to be negative.
The results were in, and five doctors later I was officially told I was hypothyroid. I was elated and right all along!
I was still in pain from the spinal tap, but was so happy to have finally found some sort of answer. A few weeks before, I found out that after never having a cavity in my life I now had eight and was scheduled for fillings the following morning. That night was one of my worst nights by far. My mind was racing and crazy thoughts were overlapping each other in my head. My toes were swollen, hot and red, and caused my entire foot to ache. I was crying from the pain and my mind was spiraling. And then I started to jerk. At first it was just a few jerks like normal. Then it turned into a convulsion of jerking. My body was shaking and the pain in my feet was unbearable. I called my parents, who were out of town, and they told me my only option was to wait it through or head to the emergency room. I avoided the 5 hour trip to the ER and woke up the next morning to go to my dentist appointment.
I had stayed up almost all night and was exhausted form jerking and being in so much pain. The dentist took one look at me and checked my blood pressure and put me on oxygen. I was incoherent, making rapid, panicked speech, while trying desperately to describe the joint pain and possible seizure I had experienced the night before. The dentist and her staff listened to my entire story and called several doctors arranging for me to be seen by someone immediately. Unfortunately Insurance companies require referrals, which require 24 hours, and ended in me without any doctors and without any answers.
My dentist called my doctor in College Station, where the nurse practitioner had previously missed my thyroid labs (It was at this point I was told that the nurse practitioner had left the practice). She talked to a new doctor there and explained what she had seen and how mentally unstable I had become. That next week I was off to College Station where I was seen by the doctor and given pills for my "mental issues", and thyroid hormone replacement pills for my hypothyroidism. I was also sent to a psychiatrist who was going to manage my mental health.
After the first convulsing episode I experienced several more. Sometimes I would feel them coming, or have visual changes, or a feeling throughout my body that told me they were coming. First my left arm would jerk and shake and then the right side of my body would begin to convulse. I would remain conscious the entire time, but the spells took everything out of me. Sometimes I would have 6-7 a day and be left to fall asleep in a coma like state. When I went back to my neurologist my anti-convulsion medication was doubled and I was urged to find an internal medicine doctor and an endocrinologist to assess my health.
During the next few weeks of my life I started to feel better. I had found an Endocrinologist who I trusted and I had finally been officially diagnosed with Hashimoto’s Thyroiditis after lab results indicated thyroid peroxidase antibodies. At this point my endocrinologist urged me to continue my search for answers because he did not believe that my thyroid disease was causing all of my varied symptoms. I started going over my previous research and realized that at this point I met the criteria to be diagnosed with Systematic Lupus Erythmatosus. I had a positive ANA level, pleurisy, joint pain, and seizures and psychosis. I knew I was on the right path.
I got extremely lucky when I called the University of Texas Rheumatology Department and there was an appointment open for the next day with the medical director of the entire internal medicine program. I went in with my charts, labs, and a thorough history and expected the best. The doctor listened to my jumbled version of a history as a nervously spit out old dates and symptoms. I explained to her the new addition of joint pain in my fingers, hands, and toes, and the horrible sharp stabbing pain I felt when I would take a deep breath. I knew the answer was so close. She ordered a Lupus panel of labs and scheduled a follow up in a couple of weeks for the results. Over the next couple of days after my appointment I started experiencing some strange, new and even familiar symptoms.
My hands started to become extremely temperature sensitive. If I was cold my hands would turn bone white, then purplish, and upon re warming they would flush and becoming blotchy red and white. Sometimes it looked like some fingers were dark red while others were completely white. Sometimes the palm side of my hands and fingers will have red streaks down each finger. Over the next couple of days I tested this symptom by exposing my fingers to cold temperature for 20 seconds and then taking pictures of the results. On July 25,, 2009 at around eleven at night I started experiencing a symptom that had been haunting my memory: I felt like there was a knife stabbing me to the right of my spine.
I called the on call service at my Rheumatology office and spoke with a doctor who told me to go to the Emergency Room in case I had kidney stones or a kidney infection. After three missed IV stab wounds, a negative cat scan, and a prescription for a medication I already had at home in my cabinet, I went home completely defeated. I had a sore on the lining of my gums and my throat and glands were swollen. My tongue was bright pink and looked like a strawberry. I started to feel extremely tired and sick. The next few days went by slow as I slept all day and waited on results from my labs.
On July 31, 2009 I got a call from the nurse at my doctor’s office saying that my labs came back all normal except for an ANA level of 1:640. The nurse then proceeded to leave an angry message (after we played phone tag several times) that the doctor did not believe I had lupus and was not going to make a definitive diagnosis. The tears poured out of my eyes. This was just going to be another dead end. That is when I felt my face start to burn.
I stayed up all night and took pictures of my face as a rash began to form on my nose and cheeks. I could see the raised, bumpy, light pink rash and knew something was not right.The rash has stayed on my face since that night. The rash stings and burns on my face and when I step outside, even for less than minute, it turns a brighter red. I also noticed my skin starting to become ultra sensitive to the sun light. After only 10 minutes of being in the car, the sun shining through the tinted windows caused my legs to get a light pink, splotchy rash.
Starting in July of 2008 I started experiencing sharp pain in my back (next to the spine) one weekend. I had never had kidney stones or a kidney infection but based on my knowledge of anatomy and medicine I went into an urgent care clinic. The doctor who saw me ran labs on urine, and did a full exam where he noticed I had some ulcers in my mouth and in my nose. My doctor asked me what those were and I responded assuming that I had Coxsackie virus since I had been feeling a little fluish but didnt seem to have a fever. He kind of smiled and laughed a bit at my conclusion. Too much Discovery Health for me, he probably thought. Well after his exam he told me he thought I was having the onset of a shingles attack. Yes, that’s right he was diagnosing me, a 20 year old with shingles. He prescribed me anti virals and sent me on my way. I never ever developed any other symptoms of shingles.
I entered my sophomore year that fall and things were going great despite a 17hr heavy course load of organic chemistry, physics, and calculus. In September of 2008 I started experiencing some very odd symptoms. At first my eyes started to hurt when I would move them side to side. Soon I felt very dizzy all the time and was constantly feeling nauseated. This is when I first went to see a nurse practitioner in my college town. I felt very ill and was feeling clammy and shaky. She thought that I probably had some sort of fluid or salts in my ear causing some kind of vertigo problem. She performed a test where she would sit me on the table and then lay me back real fast hoping to get a result from laying me down. Instead of reacting from that, I sat up and started feeling very sick. I started sweating and feeling dizzy and nauseous. After weeks of feeling sick and tired I was sent to an Ear Nose and Throat doctor who determined that my ears were completely normal, but gave me two shots of steroids and told me it would clear up eventually.
I actually just realized that around this time I went to another urgent care place in college station because of problems breathing and coughing. When he listened to my chest I remember him saying he heard lot of rubbing and that it sounded terrible... maybe that will be a clue for later on... (sorry I get sidetracked)
I finally became better from my supposed "viral bout" and was back on my way to finishing the semester, though I was extremely exhausted. At the end of the semester I went home to Houston Texas for my winter break. I was feeling unusually tired and sick, but I tried to continue with the festivities of Christmas. Right around Christmas, I started to have chest pains. I felt like a knife was stabbing into my rib cage, and like a heavy book was lying on my chest. After a few days of this persisting pain I went back to the original Urgent Care clinic that had previously diagnosed me with shingles. I was very scared, because I was very worried I was having some kind of heart problem. The doctor I saw was like a robot, answering questions like a dictionary and treating me like I was a hypochondriac. After an EKG and X-Rays she determined that I had inflammation in my lungs and I was experiencing the pain associated with pleurisy. She injected my with a steroid shotand some ibuprofen. I went home and eventually the pain went away and the winter break came to an end.
The spring semester started and I was feeling very tired and out of it. I had several occasions where I went to the doctor complaining of viral like symptoms and I just feel plain awful. Then in February of 2009 I got Influenza B and was knocked out for a week, missing all of my classes and three exams. Just as I was recovering from the flu I noticed my throat still hurt and didn’t seem to be getting better. I went to the nurse practitioners office and they tested me for strep, and what do you know, it was positive. I was completely drained at this point. Even after a round of antibiotics, I just couldn’t get out of bed. My body ached all the time, and I was always taking a nap. My grades started to suffer, and attending lectures became infrequent. Being the medically educated student I was, I refused to accept that I was just feeling the after effects of being sick, and I started doing some research.
After hours spent searching the internet and medical message boards, I came across Hashimoto’s Thyroiditis. I read the symptoms and realized how much I sounded like what I was reading. I ran to my parents and asked my dad if hypothyroidism ran in our family, because I remembered my dad had to take medicine for something along those lines. The moment he said yes, I knew I had found my answer. The next day I called the old faithful nurse practitioner and made an appointment to get blood work done.
When I came in for my appointment I was carrying a pad of paper and a list of symptoms. I told her I thought I was hypothyroid and then listed several symptoms including low blood pressure, dizziness, and shortness of breath, weight gain, fatigue, malaise, and confusion. She agreed to test me and added a few routine blood tests to the list. A few days later I got a call from her nurse that all my blood work had came out normal accept for my ANA levels which were at 1:160. I ran for a piece of paper and a pen, but by the time I got them, the conversation was over and I had no idea what was going on. I started researching immediately and realized the next step, even before the nurse practitioner returned my desperate phone calls, was to see a Rheumatologist.
To get me in faster, my nurse practitioner scheduled me to see a nurse practitioner working at a Rheumatology office. My appointment included a history of symptoms, which at the time were not that varied, but still included developing joint pain, and even more increased fatigue. I told her that I had a feeling it was Lupus, but I had no real hard evidence behind me except for one lab result, a bad memory of doctors appointment, and an internal instinct screaming the answer. The nurse practitioner ran a set of labs to find more answers.
My follow up appointment two weeks later was more than a joke. The actual Rheumatologist saw me this time and went straight into reading my labs straight off the paper. Negative for Sjoegrens. Negative RA Factor. Negative C3 and C4 levels. Negative Anti-Sm and Anti-DNA. Positive ANA of 1:320. Oh and by the way, your Epstein Barr Virus levels are really, really, high and we think you have Chronic Fatigue Syndrome or Chronic Epstein Bar Virus. I was immediately sent away with a copy of my labs and the instructions to find an Infectious Diseases doctor. I tried to explain to them that I had already had Mono in the past when I was in high school, but they were convinced on their theory of EBV.
I was panicked and scared and I cried the whole way home. I couldn’t sleep. It was about this time things started getting really scary. One day I noticed how my arms, and legs, and even fingers would jerk and twitch. At first it was small, and only noticeable by me. I tried to describe the experience to my family but my vague knowledge of the matter made for a very inaccurate description. I called them “twitches,” which I now know is completely different than a jerk. I made an appointment with an Infectious Disease Specialist in the Houston Medical Center and took manila folders of labs and my own notes.
Over the next couple of weeks the devastating dizziness and motion sickness returned (which would later leave me incapable of driving a car for over a month) and I couldn’t even ride in a car without getting sick. I told the next doctor I was scared I had chronic EBV, and handed him my labs. He took one look at them and threw them away. Literally, he threw them away in the trash can. He said, your EBV panel shows no active disease, but only results of someone who had mono in the past. This was the first time I learned the lesson that doctors weren’t always right.
I told him about my “twitching” and he immediately ordered a brain MRI for that day at the Methodist Hospital. I guess my ignorance saved me, because at this point I wasn’t even thinking about the very real possibility of having something as scary as a brain tumor. I was however worried about Multiple Sclerosis; I thought the twitching meant it was true. He prescribed me a sedative for my anxiety and insomnia, and told me he would do further testing for Lyme’s Disease and Sarcoidosis, an autoimmune disease.
The MRI was loud and reality really set in when I was laying in a tube of magnets. A brace was placed around my head so that my brain would be perfectly still for the pictures. I was feeling claustrophobic in the small area, but was reassured by the tech that the head brace had a mirror attached so that I would be able to see out the tube and into the room. Looking at the mirror was very reassuring, as I could see nurses passing by and the tech rolling back and forth from computer to computer in the control room. The MRI started and I zoned out listening to the banging of magnets, all the time watching my legs jerk in the mirror connected to my head brace.
My follow up appointment was a relief. No tumors, no lesions, negative lab tests, and no appearance of anything wrong. At this point though, my jerks were becoming so bad that my leg would kick out while I would sit on the exam table. I cried and my body jerked while the doctor told me he was going to refer me to a neurologist for further testing. He happened to share an office space with a neurologist and I was booked to see her the next week. Next week could not have felt like any longer. I was a wreck. At this point my muscles felt like they were giving in and my right leg seemed to go weak when I was walking. I ran into everything and lost my balance often. My right foot even started to drop down and sometimes drag when I would walk.
The next neurologist I saw was interesting to say the least;horrible bed side manner and lack of empathy were all this socially challenged doctor seemed to have. She did what any other doctor would have done with a person presenting themselves, as I was: order a full work up to check for demylenating diseases. They arranged for appointments to be set up for Evoked Potentials, EMGs, EEGs, and a Spinal MRI. I was scheduled to return in a couple of weeks after all the appointments were completed.
My testing day at the medical center was awful. I was shocked with electrodes, jabbed with needles, and injected with contrasting fluid. I was preparing myself for the worse scenario. I expected lesions to be found and my life to end with a diagnosis of MS. But surprisingly it didn’t. All tests returned normal except for findings of mild scoliosis and degenerative disks in my spine. I was MS free and to my doctor that meant I was completely fine. I would get over my “benign jerking” and my chest pains, fatigue, and other problems would go away as I got older. I was livid.
I started having tingling in my hands and toes. They would go numb and fall asleep but I could never wake them up. One night I stood up and my vision went black and my ears started ringing. My heart was pounding so fast and I couldn’t see or hear anything. The next day while I was reading my eyes diverted from the page and began jerking and shaking side to side. I knew there was something wrong.
I immediately scheduled an appointment with a new neurologist and began analyzing each lab test I had. After reviewing my labs and researching results online I was able to come to the conclusion that my original thyroid levels were overlooked. My TSH level was border line and I knew according to the new Endocrinology standards that my levels were well above normal while still within lab limits. I knew I was hypothyroid.
I saw a new neurologist who immediately requested a spinal tap be done and I requested my thyroid levels to be rechecked. He also identified my jerking muscles as myoclonic jerks and wrote me prescription for Anti-Convulsants (which I am assuming the other neurologist just completely overlooked).
After the spinal tap I became very, very sick. I got a spinal headache and horrible back pain up and down the sides of my spine and neck. I became dehydrated and ended up in the Emergency Room. The morning I went to the ER I was the worst I had ever been, crying, screaming, and hurling into a trash can. I yelled so loud the entire ER must have heard me. I was hyperventilating and was so uncomfortable that I thought I could not go on living in this much agony. Soon the drugs wore in and I was sent home with a pounding headache and a couple of prescriptions. The spinal tap turned out to be negative.
The results were in, and five doctors later I was officially told I was hypothyroid. I was elated and right all along!
I was still in pain from the spinal tap, but was so happy to have finally found some sort of answer. A few weeks before, I found out that after never having a cavity in my life I now had eight and was scheduled for fillings the following morning. That night was one of my worst nights by far. My mind was racing and crazy thoughts were overlapping each other in my head. My toes were swollen, hot and red, and caused my entire foot to ache. I was crying from the pain and my mind was spiraling. And then I started to jerk. At first it was just a few jerks like normal. Then it turned into a convulsion of jerking. My body was shaking and the pain in my feet was unbearable. I called my parents, who were out of town, and they told me my only option was to wait it through or head to the emergency room. I avoided the 5 hour trip to the ER and woke up the next morning to go to my dentist appointment.
I had stayed up almost all night and was exhausted form jerking and being in so much pain. The dentist took one look at me and checked my blood pressure and put me on oxygen. I was incoherent, making rapid, panicked speech, while trying desperately to describe the joint pain and possible seizure I had experienced the night before. The dentist and her staff listened to my entire story and called several doctors arranging for me to be seen by someone immediately. Unfortunately Insurance companies require referrals, which require 24 hours, and ended in me without any doctors and without any answers.
My dentist called my doctor in College Station, where the nurse practitioner had previously missed my thyroid labs (It was at this point I was told that the nurse practitioner had left the practice). She talked to a new doctor there and explained what she had seen and how mentally unstable I had become. That next week I was off to College Station where I was seen by the doctor and given pills for my "mental issues", and thyroid hormone replacement pills for my hypothyroidism. I was also sent to a psychiatrist who was going to manage my mental health.
After the first convulsing episode I experienced several more. Sometimes I would feel them coming, or have visual changes, or a feeling throughout my body that told me they were coming. First my left arm would jerk and shake and then the right side of my body would begin to convulse. I would remain conscious the entire time, but the spells took everything out of me. Sometimes I would have 6-7 a day and be left to fall asleep in a coma like state. When I went back to my neurologist my anti-convulsion medication was doubled and I was urged to find an internal medicine doctor and an endocrinologist to assess my health.
During the next few weeks of my life I started to feel better. I had found an Endocrinologist who I trusted and I had finally been officially diagnosed with Hashimoto’s Thyroiditis after lab results indicated thyroid peroxidase antibodies. At this point my endocrinologist urged me to continue my search for answers because he did not believe that my thyroid disease was causing all of my varied symptoms. I started going over my previous research and realized that at this point I met the criteria to be diagnosed with Systematic Lupus Erythmatosus. I had a positive ANA level, pleurisy, joint pain, and seizures and psychosis. I knew I was on the right path.
I got extremely lucky when I called the University of Texas Rheumatology Department and there was an appointment open for the next day with the medical director of the entire internal medicine program. I went in with my charts, labs, and a thorough history and expected the best. The doctor listened to my jumbled version of a history as a nervously spit out old dates and symptoms. I explained to her the new addition of joint pain in my fingers, hands, and toes, and the horrible sharp stabbing pain I felt when I would take a deep breath. I knew the answer was so close. She ordered a Lupus panel of labs and scheduled a follow up in a couple of weeks for the results. Over the next couple of days after my appointment I started experiencing some strange, new and even familiar symptoms.
My hands started to become extremely temperature sensitive. If I was cold my hands would turn bone white, then purplish, and upon re warming they would flush and becoming blotchy red and white. Sometimes it looked like some fingers were dark red while others were completely white. Sometimes the palm side of my hands and fingers will have red streaks down each finger. Over the next couple of days I tested this symptom by exposing my fingers to cold temperature for 20 seconds and then taking pictures of the results. On July 25,, 2009 at around eleven at night I started experiencing a symptom that had been haunting my memory: I felt like there was a knife stabbing me to the right of my spine.
I called the on call service at my Rheumatology office and spoke with a doctor who told me to go to the Emergency Room in case I had kidney stones or a kidney infection. After three missed IV stab wounds, a negative cat scan, and a prescription for a medication I already had at home in my cabinet, I went home completely defeated. I had a sore on the lining of my gums and my throat and glands were swollen. My tongue was bright pink and looked like a strawberry. I started to feel extremely tired and sick. The next few days went by slow as I slept all day and waited on results from my labs.
On July 31, 2009 I got a call from the nurse at my doctor’s office saying that my labs came back all normal except for an ANA level of 1:640. The nurse then proceeded to leave an angry message (after we played phone tag several times) that the doctor did not believe I had lupus and was not going to make a definitive diagnosis. The tears poured out of my eyes. This was just going to be another dead end. That is when I felt my face start to burn.
I stayed up all night and took pictures of my face as a rash began to form on my nose and cheeks. I could see the raised, bumpy, light pink rash and knew something was not right.The rash has stayed on my face since that night. The rash stings and burns on my face and when I step outside, even for less than minute, it turns a brighter red. I also noticed my skin starting to become ultra sensitive to the sun light. After only 10 minutes of being in the car, the sun shining through the tinted windows caused my legs to get a light pink, splotchy rash.
Well, that's a heck of a story. Nice to see you were at least coherent enough to transcribe it. 
