In my previous post, I began my story of how I got my diagnoses. I left off at the point where I refused to accept what my doctors were telling me: There was nothing wrong with me, so everything must be in my head. I knew something was wrong, and I was determined to get real answers. Here is the rest of my story.
I saw a new primary care doctor at the beginning of 2015. A standard blood panel revealed that my vitamin d level was so low it was almost nonexistent. According to him, all I needed was vitamin d to feel better. This was a relief to me at first because it was a simple process to start feeling better. Unfortunately, I did not feel better after several weeks of taking vitamin d. I was getting sicker. My joints were in severe pain almost all the time, I ran a fever 1-2 weeks of every month, I would get a headache behind my right eye that would last from days to weeks at a time, and I often missed work because I was too weak to get out of bed. When I returned to see my doctor for a follow-up appointment, he said, “I did extensive testing on you. There is nothing else wrong with you. What you are considering a fever is low-grade, so they are of no concern. If you are still tired, you are not sick. You are depressed.” One: He did a standard blood panel; that is hardly “extensive.” Two: He never ordered follow up blood work to see if my vitamin d level was improving. Three: Yes, my fevers were low grade, but it is never normal to run a fever for days on end. I was stunned by this doctor’s heartlessness. A couple of friends who were in medical school suggested an endocrinologist, so that is where I went next.
Hormone testing revealed that my hormone levels were consistent with that of a pregnant woman, and testosterone level was within the normal range for a man (the only 2 things I could be 100% were not wrong with me). My endocrinologist believed this was due to a pituitary tumor, so she ordered more lab work to test for a specific type of pituitary tumor. She also requested a copy of the ultrasound I had done the previous year. That test came back negative, so she completely ruled out a pituitary tumor. But I learned that my ultrasound from the previous year wasn’t normal. It was labeled normal, but the notes said that my right ovary was almost twice its size and had a mass. I have a family history of ovarian cancer, so that terrified me. Whatever was going on with my ovary had been untreated for at least over a year. My endo, however, was not so concerned. She told me there was nothing else she could do for me, so she referred me to a sleep doctor. Again, I was stunned by this doctor’s carelessness. I potentially had ovarian cancer, but she didn’t think I needed to have it checked out. She was a hormone doctor, yet she had no interest in fixing my out of control hormones.
Insurance complications caused me to have to wait several months to see my sleep doctor. I decided to see an OBGYN to get a new ultrasound while I waited for that appointment. My OBGYN wondered why my endocrinologist didn’t order an MRI to check my brain for a tumor since my hormone levels were so high. But wasn’t concerned enough to order one for me. The ultrasound came back clear this time. My OBGYN suggested that I probably had several cysts that had all ruptured, which would explain those times I had severe ovary pain with a fever. I was no longer having ovary pain, but I was still having frequent fevers. Since there was nothing wrong with my reproductive organs, my doctor told me there nothing she could do for me and wished me good luck. I was relieved that I didn’t have ovarian cancer, but frustrated because I still did not have answers.
When I saw my sleep doctor, he looked at my hormone levels and told me, “Hmm. It has been a long time since I have studied endocrinology, but I thought you should get an MRI to check for a tumor when your hormone levels are that high.” But he didn’t order one either. He did send me for a sleep study. The sleep study was one of the most brutal tests I have done. It was a night a day study, so I was locked in a room and attached to wires from head to toe from 8 pm to 4:30 pm the next day. Every movement I made was video recorded (to see if I slept-walked or had narcoleptic attacks). The night study consisted of sleeping a regular night’s sleep while having my breathing and movements monitored. The day study consisted of taking a 30-minute nap every 2 hours for a total of 5 naps. I basically had to sleep on demand. My sleep study results were abnormal, but they did not fall under the diagnostic criteria for sleep apnea or narcolepsy (what I was being tested for). My sleep doctor was sympathetic towards me, but he did not know how to help me. I was so discouraged. It was now mid-November 2015, I was sicker than I had ever been in my life, yet no one had answers for me.
I was at a loss at what to do next, so I went to see a new primary care doctor. He looked at my paperwork, and told me, “I can tell you have been to multiple places and haven’t gotten answers. I want you to know that I believe you, and I will do everything I can to find out what is wrong with you and get you on the path to feeling better.” That made me cry. Finally, someone who had the power to help me believed me. He meant what he said. He asked me what my doctors had already tested me for and when was the first moment I started to feel sick. When I told my doctor it was after my first surgery, he asked me if I had received blood during the surgery. In an effort to save my fallopian tube, my surgeon did try injecting blood into the tube. So my doctor decided to test me for bloodborne diseases. There was a test that, had it been positive, it would have shown an underactive immune system. When the results came back, it showed my immune system was overactive, indicating signs of lupus. My doctor ordered more blood work to confirm whether or not I had lupus and referred me to a rheumatologist. I went on the day before Christmas Eve to get that bloodwork. I had to wait a few weeks for the results.
It was two days into 2016. I had noticed that I often ran into things that I should have seen in my peripheral vision. I couldn’t tell if it was because I was extra clumsy because I was exhausted or because my vision was off, so I decided to get an eye exam. My eye doctor was about to dilate my pupils when she abruptly stopped the exam. She told me that I had narrow angles in my eyes which is either from narrow angle glaucoma or a brain tumor. It was serious because if the angles ever completely shut, I will go completely blind. That is one of my deepest fears. Here I was a few days away from finding out whether or not I had lupus, and now there was also the possibility of a brain tumor and/or blindness. A few days later, I was officially diagnosed with lupus. I went through a few different emotions after I was diagnosed:
Relief
Do not take this the wrong way. I never wanted a lupus diagnosis. But after so many years of being undiagnosed, it was finally on paper that I was not crazy. My physical problems were valid. I had it in my mind that if I had a diagnosis, then doctors would know how to treat me, and I could finally start feeling better. So, for me, this diagnosis was the beginning of my healing.
Anger
I was angry at every doctor that ever dismissed me over the years. It took 14 years to get a diagnosis. 14 years that I can never get back. Doctors are supposed to care for the sick. Some of mine clearly did not. I believe I would not have had to suffer as much as I have had I been diagnosed and treated sooner. What could my life have been if I had gotten the help I need from the beginning of my sickness? Could I have been a collegiate athlete? Could I have had a stronger academic performance in college? Could my career be more successful? Could I be living in my home by now if I didn’t have to suffer the financial ramifications of severe chronic illness? I will never know. All I know is that sickness has prevented me from reaching my full potential, and that frustrates me.
Fear
I had no idea what my future held, and I was scared.
I saw an ophthalmologist a couple of weeks after receiving my lupus diagnosis. He ruled out narrow angle glaucoma, so he referred me to a neurologist to rule out a tumor. My neurologist took one look at my hormone levels and got upset. “How did they not scan your brain for a tumor with these hormone levels? This is a classic pituitary tumor sign.” At that moment I knew in my gut that I had a tumor, and it had been untreated for at least a year. My heart sank. He sent me for an MRI, and then I had to wait 6 agonizing weeks for the results. My neurologist happened to also specialize in sleep medicine, so he reviewed my sleep study. I was diagnosed with both a pituitary tumor and idiopathic hypersomnia on February 28, 2016. I finally had answers for everything that was wrong with my health. Lupus explained my fevers and joint pain. The pituitary tumor was the cause of my abnormal hormone levels, and idiopathic hypersomnia explained my severe fatigue.
I wish I could say that since I officially had diagnoses, that was the start of my recovery. That was not the case. My health got much worse before it started to get better. Keep following my journey to learn how I eventually started to get better.
If you are in a similar situation of trying to find answers to your health problems, I want you to know that I believe you. Trust that you know your body. I had to go through many doctors before I found some who would believe me and work with me.
If you are a medical professional, I ask that you not judge your patients by their outward appearance. They may look fine on the outside, but they can be very sick on the inside. I have to believe that if you go through the years of intense schooling and training that you go through, it is because you want to help people. Please do not forget that in the real world.
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28 COMMENTS
Laura Lee
5 years agoI find that doctors are either outstanding – as in the doctors who finally diagnosed you or they’re complacent as in the ones who so easily dismissed you. My mom has Lupus. Good luck on your health journey.
Patricia P.
5 years agoThat’s quite the story. I’m sorry that the other doctors didn’t take you seriously. That is so baffling and frustrating. I’m glad you finally got a diagnosis. I can see why you feel relieved. Thank you for sharing your story. It will give others hope and the power not to give up on themselves, when others have.
Hillari
5 years agoOh my goodness – I cannot imagine your intense frustrations at all of this, and your fear. I am so sorry that you had to navigate such turbulent waters. It is completely unfair that some doctors don’t LISTEN to their patients. We know our bodies best 🙁
Beth Shields
5 years agoI am a retired healthcare professional. I am so sorry for your journey. Thank you for sharing and reminding us that we are serving you as the patient and trying to close those gaps for you. And though it doesn’t seem right, I always encouraged my patients to push through for answers. Sometimes we could tell them, sometimes not – but the honesty was better to have. Thanks and I hope you are doing better.
Misty
5 years agoI am so sorry you went through all of that for so long with no real answers. I feel like too many doctors no longer care about finding out what is truly wrong with someone. They just assume that you are paranoid or a hypochondriac. I am however very happy for you that someone finally took the time to figure it out and get you real answers. I do not really know much about lupus, but I hope the best for you.
Diane Kurzava
5 years agoSuch a hard journey that you have been on, but I admire your resilience! You are a fighter and will overcome!
Lee Anne
5 years agoMy goodness. Sorry that you had to go through all of that but it is a good reminder that you have to feel confident and trust in your doctor and if you don’t then you have to keep looking! I’m glad you were able to find the right people to work with to get a diagnosis. Sharing this will give others a few things to consider if they find themselves in a similar boat.
Sara - Seek Discover Learn
5 years agoThank you for sharing your story. I’m sorry it took you so long to get answers, it should not have taken you that long, the Dr’s should’ve been more diligent. Autoimmune disorders are hard to figure out. I almost died in 2012 due to a suspected autoimmune (lupus) flare-up, although I don’t have a lupus diagnosis. Dr’s still don’t know for sure what almost killed me, just what they assume. They wanted me to be on some different medications for life because of it. I told them that without proof I wasn’t going to risk long term side effects of medicine. I was only 31 when all this happened. Thankfully I haven’t had any other episodes since then. Today my bloodwork shows consistent with mixed connective tissue disease rather than lupus, but I don’t have any issues from it at the moment. Your story is an encouragement to others in the same boat.
Debbie
5 years agoWow so sorry it took 14 years! Hope you are much better now!
Carrie Cochran
5 years agoI’ve heard so many stories like yours in the past year, and it makes my heart break for you. I’m so sorry that you’ve been put through so much pain, but I’m glad that (at least by what you’ve hinted) you’ve found a way to be happy despite your circumstances!
Tricia Snow
5 years agoI can completely relate to your story. Something needs to change in the medical community. And with everything that is going on in the medical community, it is only getting worse.
Santana
5 years agoI feel terrible that you had to endure what you’ve been through. I, myself, have been very fortunate throughout my lifetime so far to always have a great medical team.
Shirley
5 years agoYou have gone through a lot! I have Crohns and I know I was so lucky to have a doctor that diagnosed my disease very early. I also understand the feeling of relief to find out what you have and that it can be treated. Hang in there. An autoimmune disease is hard to live with but life is worth living.
Maria
5 years agoIt’s appalling that so many doctors were so careless with your health, I’m sorry that you had to go through all that. That bring said, Bravo for pushing until you were properly diagnosed.
Jennifer
5 years agoWow, I love your story because I a can relate. Born and raised in California I was diagnosed with Rathke’s Cleft Cyst. I had brain surgery when I was 6 years old. I have stopped functioning completely 2 times in my life. I was fine when I went to bed and when I woke up there was something very wrong with me. All the doctors I saw just made me feel like it was all in my head. Here it is 25 years later and I may have to have surgery again to drain the cyst but have no insurance. I wish you the best of luck with everything. Thank You for your story.
Lisa
5 years agoSo hard! I have been through a time like this when I knew I was sick and doctor’s dismissed me.
Holly
5 years agoChronic illnesses are the hardest diagnosis to receive because you know that you have to learn to live your life differently, and you go through the grieving process of losing the life you thought you were going to have… it took me about 9 years before I would even admit that I have MS.. sending you love. positive thoughts and prayers to stay healthy and positive..
No matter how hard it is!
Kendra
5 years agoWhat a frustrating experience! I’m so sorry you had to go through so much dismissive responses in order to get to the root of the problems you were having. This is why so many people end up self-diagnosing their conditions.
Rachel Da silva
5 years agoWow I am so sorry how long it took for you! You are so strong, and you have a powerful story
Cindy
5 years agoI’m so glad you got answers! I lost faith in the medical community a long time ago. I only got better when I took back responsibility for my health.
Sandi
5 years agoSuch a difficult journey for you. I have MS and it took years to diagnose also. Be well!
Jen
5 years agoWow! It’s hard to believe so many medical professionals totally overlooked your symptoms! Glad you have answers and are on a better path.
Tiffany
5 years agoHappy that you finally have a direction to search for answers now that you have a diagnosis. That can be the hardest part, hopefully you’ll continue to find answers! Be well!
Lisa
5 years agoThank you for being so raw about your emotions during such a challenging time
Pauline
5 years agoI’m so glad you finally figured out what was wrong.
Ruth Iaela-Pukahi
5 years agoI have never gone through the trials you have gone through just to figure out what was going on with your body. All that time and energy but you NEVER gave up! I’m proud of you.
Brenda
5 years agoHi it’s Brenda from Health.RubyHemMinistries.com Doctors don’t always know what’s up. I have been through several before finding mine. She’s actually a nurse practitioner who’s willing to work with my naturopath. Keep your head up, you’ll find the perfect medical team and treatment plan. Seems like you’re there now 🙂