Not sure where else to turn
Hello! I’m a 27 year old female, ET Jak2 positive. History of left leg dvt. This may be long, so apologies for that. Diagnosed completely with bone marrow biopsy beginning of June, but have known since about a year ago. Just recently start hydrea, on the night of the 23rd of June. Coming here because I’ve been dealing with some issues and getting no help…
On the 22nd or the morning of the 23rd, I began having this sudden back pain. Primary worst pain is a sharp, stabbing pain on my right side just below my shoulder blade. Pain travels sometimes to the left, a little lower, sometimes also have same pain on the left in the same spot, right In the middle of the back, but there is a constant stabbing in that one spot. Also experiencing chest pain and tightness (increased with heavier or deep breathing), feels hard to breath sometimes, feel like I need to take shallower breathes, dizziness/lightheaded, pain down into left shoulder, SPLITTING headaches (these will sometimes comes on violently then pass after 5-10 minutes). I can’t sit, lay, or stand comfortable. I toss and turn all night long bc sleeping is so uncomfortable.
Moving on from symptoms, I’ve been to the er twice and a NP once. Ct of chest and abdomen then said show no sign of pulmonary embolism, gallbladder issues, or appendix issues. No pneumonia. Literally one er doctor told me word for word “I don’t know what’s wrong with you but I know it’s not life threatening “. This same doctor I also had to explain my diagnosis to him, which he still wasn’t seeming to understand.
I’ve had most routine bloodwork, they did not run my d dimer factor. (This was tested on June 1 and was. <19)
From the er visit I went to on the 1st to the 3rd, my platelets went up 38,000. My white cells also went from 8.8 to 10.8 in the two days. Also had blood pressures of 146/89 150/77. Also abnormal ecg, but doctor never even brought that up.
Nurse practitioner and first er doctor said “they wonder if it’s stomach related” but I have no stomach issues except for occasional bloating (which coincided with my menstrual cycle). All of this being said, I’m still struggling. Pain is getting worse daily but I now feel I’ve lost all options and hope of it stopping or someone finding a cause. Thank you for advice and help.