I say my condition started in 2008 but wasn't actually diagnosed until February 2018. Whilst in the ER because of an allergic reaction to Azathioprine, a doctor approached me and asked if I knew that an old chest scan, I had 10 years ago showed that I had swollen lymph nodes in my chest. I said yes and it was ignored. I would say I probably had Sarcoidosis then.
I have had all sorts of unusual and unexplained symptoms over the years and have been suffering fatigue for a long time. My symptoms slowly got worse from early 2017 onwards. I couldn't stay awake at work, so would nap during my lunch break. I would have intermittent unexplained chest pain and then it would go away. I felt generally unwell, wasn't sleeping very well at night, I would run hot, like hot flushes, hot feet, aching joints, muscle aches etc.
By November 2017 my fatigue and chest pain was so severe, I insisted that my GP run some tests. He checked my heart and ran some bloods with no significant findings. I mentioned that old scan showing enlarged lymph nodes in my chest and he ordered another CT scan. It too showed enlarged lymph nodes. He sent a referral for me to see a lung specialist but said I probably wouldn't hear from him for a while. I received a call that afternoon and was in for an appointment the following week. I was sent for a PET scan which lit up like a Christmas tree from my neck right down to my upper abdomen. It was thought that I had Lymphoma. Two weeks later I was in the hospital to have a Bronchoscopy, and three biopsy's were performed ruling out Lymphoma and diagnosing Sarcoidosis.
I have now been unable to work for the past three and a half months and have run out of leave. I am currently unemployed.
Kazaa, Iâm so sorry it took so long for you to get diagnosed, and that getting the diagnosis sounded scary. I canât work right now either. Itâs a big change from my previous life and Iâm still trying to get used to it.
Stay strong!