- CASE FILE
I am 35 yrs old and have been sick after for over 4 years with chronic fatigue, chronic pain, cough, sore throat, cancer, etc.
ABOUT THIS CASE FILE
It started in 2006 when I had my first knee surgery on my right knee. They completed a lateral release and everything went well. I knew eventually I would have to have a lateral release on my left knee and that time came approximately April 2010. That surgery did not go as planned and they had to repeat the surgery September 2010. Then September 2011, I had to go through IT band surgery on my left knee. In the middle of all my knee surgeries I was getting severe sore throats, enlarged lymph nodes in neck, and flu like symptoms. I was tested for strep throat and mono and all was negative. Doctors would constantly give me antibiotics and it would minimize my symptoms but they would never completely go away. This went on for over a year and symptoms would be every 2-4 weeks. I saw an ENT doctor and he did not see anything but inflammation. In January 2011, I went to see my primary care doctor and she sent me to see a surgeon to talk about doing biopsies of the lymph nodes. We decided February 2011 that the surgeon would surgically remove several lymph nodes and send for a biopsy. Results came back and it was Reactive Lymph Nodes. That was fine because all of my symptoms went away until Winter 2014-2015. Again, it started again, sore throat, flu like symptoms, enlarged lymph nodes, chronic fatigue. There was one new symptom this time! I would get a chronic cough during the cold air or strong smells (clorox, pine sol, perfume, cologne, smoke, etc). I would cough so bad that I would throw up. This would happen multiple times a day especially during the winter time. A few months later I was noticing I was nauseous and was constantly sick to my stomach. That all went on through 2015 and then February 2016 I noticed I had a large lump in the middle of my throat. The next day I immediately went to see my doctor and she sent me within 2 days to have ultrasound and that same day she called to tell me that I had a mass on my left side of my thyroid. She sent a referral over to a surgeon to have it removed since it was rather larger. When I went to see the surgeon we agreed to have it removed and then he would do a biopsy. On March 30, 2016, the left side my thyroid was removed and the results were benign (which was great) and I kept my right side. After that surgery, I completely went down hill from there. I had to start taking thyroid replacement (not a big deal) and just not feeling good at all. My chronic fatigue, pain, enlarged lymph nodes, etc got worse. There were days that I did not want to get out of the bed and everyone blamed it on my thyroid. I saw doctor after doctor and they all thought I was crazy. I remained nauseous and finally the doctors realized that I needed my gall bladder removed. While removing the gall bladder they repaired a hernia and took biopsies of abdomen (liver, lungs, etc). After the gall bladder was removed the nausea did get better but that was the only thing. All other symptoms remained. Lymph nodes were enlarged in my entire body to the point at one time doctors thought I had lymphoma then they ruled that out and then it was Lupus then that was ruled out then it was Sarcoidosis. Doctors would consistently complete labs and WBC, CRP, Sed Rate, Platlets were all elevated. I went to see an infectious disease doctor and after 20 test came back negative they decided it was not an infections. The doctors in NC had no idea so an oncologist that I was seeing made a recommendation for me to go see Mayo Clinic in Rochester, MC. I also saw my ENT doctor that I saw in 2010-2011 with the same symptoms and he agreed for me to go on to Mayo Clinic. My mother and I made the first trip to Mayo Clinic in August 2017. During my week long visit I saw a number of doctors (ENT, Oncologist, Hematologist, Infectious Disease, Internal Medicine, Dermatologist, Endocrinologist) and multiple labs and test which included a bone marrow biopsy. They completed a lot of the same labs and test but then I also had to schedule a follow up appointment with a surgeon in NC to remove more lymph nodes out of my neck and send to Mayo Clinic for their pathologist to review. We scheduled that surgery for September 2017 and then I followed back up with Mayo Clinic in October 2017. During my second trip, I met with a lot of the same doctors and also added rheumatology to the October appointments. During the October appointments they discovered that I had a mass on my right side of my thyroid. An ultrasound was completed and the doctor wanted me to just watch it and follow back up with him within a year and of course continue to see my endocrinologist in NC. During that visit, it was ruled out that it was not an infectious disease or cancer but they had no idea what it was. We traveled back to NC with still no real answers to help my symptoms. I was consistently being followed by an Oncologist in NC (although I did not have cancer) because he knew there was something wrong with me (he would always tell me that it was an auto immune/inflammatory condition). He was able to send my information to NIH and got me in there and I was still following up with Mayo Clinic. My mother and I traveled back to Mayo Clinic in August 2018 where they did the labs and test and still the same thing. Same labs were elevated and all the same symptoms continued. The endocrinologist did another ultrasound on my right side of my thyroid and the mass had grew a little. He decided to do a biopsy which came up back follicular neoplasm so he suggested for me to have it removed either there or back at home (I decided to come back to NC). September 2017 I had it removed and when I went back to the surgeon for my follow up we found out it was cancer (thank goodness it was removed). During the surgery the parathyroid glands were removed however they put them back. After this surgery, I had to increase my thyroid dosage and was put on calcium and magnesium (only for a short period of time). Still all the symptoms remained (chronic pain, fatigue, sore throat, flu like symptoms,etc). In October 2018, I went to see NIH in Maryland and they completed genetic testing however I will most likley not get the results back to approximately June 2020 so that is not really helping me (don't ask). They started me with Anakinra injections that I give to myself however they have not helped. As symptoms continue into 2019 a new issue popped up. In April 2019, I went to see my gynecologist for my annual follow up and my results came back as abnormal cells. I had this happen before but he still recommended us to do a biopsy to see what comes from that. After the biopsy I had to go in for a LEEP procedure May 2019 and then follow up with a complete hysterectomy in July 2019. It was adenocarcinoma in situ. Two weeks after my hysterectomy I started having severe right knee pain to the point that I could not walk. There was swelling and fluid built up to the point I could not even bend my knee. The doctor removed the fluid and gave me a cortisone injection. He said it was normal to see that after the hysterectomy because of the position that I was put in during surgery. Not even 10 days later the fluid built back up and had to have more fluid drained on a Monday and then Tuesday it was right back. The orthopedic doctor decided to go in surgically and clean out my knee and flush it out. About 4 weeks later the same happened with my left knee. I have gone in and had fluid drained and a cortisone injection and now I am now waiting for it to come back. If so then the orthopedist explained that we would do the same as we did with the right knee. My right knee still is not right. During my right knee surgery, tissue samples were removed and sent for pathology and nothing specific come from that. The doctor mentioned when draining fluid and while doing the surgery that it had a rheumatoid look to it. Mayo Clinic is wanting me to follow back up with them and I have done some research on my own and found Hospital for Special Surgery in NYC. I am just lost and need help! I have hurt and been tired and sick for way too long! All I want is answers so I can move forward!