u/xXBigMuffinXx

Hello and good day to everyone. I wanted to share my journey as I am coming up on a year now. Last may 2025 I went to the ER for extremely high BP. I tried to make a Dr Appt first but when I told the nurse my BP was sitting at 205/115 she told me I needed to go to the ER and they wouldn’t see me until I do. While at the ER I was having some chest pain which sparked a series of tests where they fold many lymph nodes in my neck am chest that were enlarged. A few were over 5.5cm. At this point I was told I most likely have lymphoma and I was going to need further testing and biopsies. They took a biopsy from my supraclavicular node on the left side and then I waited for results. Of course at this point my mind is extremely focused on having cancer and worrying about if I might die or what life will look like moving forward. After about a week my test results came back showing necrotizing Granulomas and no malignancy. Extremely relieved and confused I was told I could have sarcoidosis but this is extremely rare given the fact I have necrotizing Granulomas. The following month June 2025 I get more tests and a PET scan which shows SUVs ranging from 16 to 26.5. The only things lighting up on the pet scan are the lymph nodes in my chest, neck, and one in the upper abdomen. They then perform an EBUS which show necrotizing Granulomas in my chest nodes. Since then I have had many tests from CT scans to cardiac MRIs and multiple heart monitoring tests. I am scheduled for another PET (cardiac focused) on May 4th of this year. The reason I am getting so many heart tests is bc they found a scar on the bottom of my heart that has healed and they don’t know if it’s from myocarditis or cardiac sarcoidosis. The location is typical for myocarditis and all of my prior tests have come back with good news. I am told this PET will be the last test for a while but my case is a weird one as I have Sarcoidosis with a necrotizing variant and my SUVs were quite high. I am hoping for good results and will keep everyone posted! I have read so many of your stories I thought it was time to post myself. Good luck to everyone and if you have questions please feel free to ask. I tried to keep it short!