- CASE FILE
Tired of never being able to find the root cause of my medical problems. I have a history of auto-immune diseases
ABOUT THIS CASE FILE
As a young girl growing up in southern Ohio I had a rather healthy childhood. However, I did notice that after drinking a can of pop I would experience extreme muscle and joint aches in my arms and shoulders. I felt this was a little odd and never thought much more about it until I got older and kept noticing the same thing. In my teenage years I would suffer from bouts of chest pain when I was breathing at least a couple times of year and each time I was told I had pleurisy. I was always sent along my way after the diagnosis. At the age of 18 I suffered my first panic attack and started taking antidepressants to help with bouts of depression. I didn't think much of it as depression and anxiety is very common in my family. At the age of 21 I had my first migraine which I believe was the result of extreme stress and a long day of crying. Around the age of 22 I started having episodes of extreme diarrhea and was checked for Crohn's disease. After the lower GI tract exam the doctor concluded it was IBS. This period of extensive diarrhea last for about 6-8 years. I would not be able to finish a meal before I was in the bathroom. At approximately 25 yrs old after the death of my mother I started to notice a drastic decline in my health. In July 2005 I was suffering from a sore throat; however when I went to see a doctor at the primary care I was told that if I had not said my throat was hurting the doctor would have never known because my throat was not red or inflamed. He asked a few questions regarding my family members health and I told him I had recently lost my mother to a host of auto-immune disorders. He suggested that I have some additional blood work completed before sending me on my way. Approximately a week later he called and said that my blood work showed produced a positive for the antinuclear antibodies (ANA). He referred me to a rheumatologist based on the test results and family history. I followed up with the rheumatolgist who confirmed the other doctors thinking and diagnosed me with Lupus, Raynaud's and eventually a connective tissue disease. I was monitored frequently and placed on a medication known as plaquenil. Approximately 9 months after starting to see this doctor I developed what was diagnosed as peripheral neuropathy in my hands and feet. I was sent to a neurologist for the care of this condition. I was placed on 300mg of Lyrica to help with the pain. The scary part was I had no symptoms of neuropathy and it started one day in the middle of a work day. Within two days I could not walk because the pain was so severe. It was suggested I see an orthopedic surgeon to see if there was anything that could be done. The surgeon suggested scrapping the peripheral, but informed me that in an unknown amount of time the condition would return and it would be worse. I opted against doing the surgery. These conditions continued to cause problems for years. However, my husband was active duty in the military and we were required to move half-way across the country and this resulted in my seeing a whole new set of doctors. The new rheumatologist reviewed my medical records and declared I did not have Lupus and did not understand why my previous doctor had treated me with a drug like plaquenil. He had me discontinue the use. The pain I was experiencing continued and he suggested I had chronic pain syndrome. That being his final diagnosis. I also had to start seeing a new neurologist who verified and confirmed the neuropathy. He checked me for MS thinking that might be the cause of why I felt so bad and was in pain on a continual basis. The results of that came back negative. I think it is wise to mention that during all of this I started to battle insomnia and chronic fatigue. I was placed on sleeping meds as a result. During this time I would suffer from bouts of severe headaches, but nothing I couldn't control without sleep and over the counter medications. However in Dec 2012 while my husband and I were out of town for a long weekend I started feeling ill and explained to my husband that i had to go to bed. I had become overwhelmingly exhausted and felt like I had the flu. The next morning when I awoke I had a migraine, body aches, chills and was fatigued. For the next 90+ days I suffered from a migraine without any relief. I was taken by ambulance from my place of employment because I was so weak and could hardly stand-up. The hospital can a sabbatical of test and even checked me for Lyme disease. Everything came back normal. They did however find that I had a small pineal gland cyst that I was told would have nothing to do with any of the medical issues I had been experiencing. So for the next 3 months I went to two different neurologist, has sleep studies done, blood work checked, CT's and MRI's done. With everything coming back normal. A little after 90 days the migraine broke. No explanation. I continued to have an occasional migraine for about 6 months, but then they just faded away to bad headaches on occasion. Many of my symptoms disappeared or decreased while pregnant with my child in late 2013- mid 2014. However, in August 2014 I was injured in an accident and two bones in my right foot were fractured. As a result I developed a condition known as Complex Regional Pain Syndrome. This led to my needing a spinal cord simulator surgery to control the nerve pain. The simulator has helped with the condition. Thinking I was on a path to better health in June 2016 I started noticing an increase in daily headaches each day after work. At first I contributed them to stress, but they only conditioned to get worse with each passing day. I scheduled an appointment with my PCM and explained to him my previous history. He prescribed me a migraine abortive I had previously had success on and referred me to a local neurologist. The neurologist administered no test and requested no kind of medical work-up. She prescribed me a medication and said follow-up in one month. I took the medication as suggested and noticed it helped, but my anxiety level seemed to increase while taking it. I mentioned this to her and she stated that it was not possible for the medication to do that. She prescribed another medication and said follow-up in three months. During this time the headaches turned into full blown migraines that became uncontrollable with the medication prescribed or the abortive drugs. I found myself becoming a frequent flyer of the ER as the migraines and symptoms continued to worsen. I was unable to get up and go to work at least 1-2 days a week if not more and I was so fatigued I would sleep in my office when no one was around. Finally, in Dec 2016 I was admitted to the cardiac floor of the hospital because a CT showed gray and white matter in my head. This signifying a possible TIA. The hospital can numerous test and could conclude nothing other than i had a migraine and needed to stay in the hospital for 5 days for a cocktail of medications to break the migraine. I spent my days having test run and sleeping. The migraine never officially broke but it was manageable and I was released. I started seeing a new neurologist (she was my attending while in the hospital). Upon my first appointment she changed my preventatives and prescribed a stronger preventative. This however did very little to help. I have continued to see her through current while I wait for my scheduled appointment with the University of Virginia Headache Clinic. During these last 3 years i have suffered 99% of my days with some form of severe headache or migraine. I suffer from black-outs, aura, seizure like symptoms, the feeling of my eyes wanting to protrude out of my sockets, the sounds of fluid gurgling in my head, the top of my head feeling like a babies soft spot, unbearable neck and occipital pain, etc. I am currently being treated with Cymbalta as a preventative, Sumatriptan fpr emergent pain, Botox, occipitial nerve blocks, medical massages and the new prescription injectible Emgality. all while see very little help. Recently, I have started having joint aches in my wrist, elbows, and shoulders; chronic fatigue, increased urination as night, night sweats, extreme abdominal bloating, and body aches, chest pain when breathing and shortness of breath. I really just want to have some idea of what could possibly be going on.
Some additional medical information:
Previous Gallbladder Attacks
Mother has Scleroderma
Primary Pulmonary Hypertension