I was recently hospitalized with Multiple Pulmonary Embolisms (bilateral, two small on left, one significant and one questionable on right). In random well-checks over the last few years, I have had elevated platelet counts and low MPV's on CBC's. My doc at the time just told me I might want to try taking a baby aspirin and try to get my blood drawn from time to time IF I felt like it...it wasn't stressed the importance of this. That was...until I was in the hospital for 6 days for clots at which time I was seen by my new "best friend" the hematologist. At that time he told me he couldn't believe I was 31 and in for this and that no one had put me on a strict regimen prior. I agreed, I had just thought I had a touch of bronchitis or pneumonia when I entered the ER and then to find out I was essentially a walking time-bomb was a shock to say the least. My new Hematologist was quite puzzled as to what was up with my blood...so...he searched for the Jak-2 v617F mutation and BINGO, got that. He did a lupus screen which came back Positive on the HEXAGPN, and I also had a high result on my PTT-LA of 55. I'm negative for FACTOR 5. My Anti-Thrombin 3 was low at 74. My eosinophils are through the roof at 10.3. Absolute Eosinophils are 1.0. My MPV is 6.5 Low, and my Lymph% AUTO is 24.4 low. My doctor has ruled me as having ET (Essential Thrombocytosis) but is suspecting some other possible culprit. He is screening me currently for Chronic Myelogenous Leukemia, Myelofibrosis, and (the basic one I'm hoping for at this point: just ET), as well as lupus. I have epilepsy of unknown etiology since age 17. I had a bone marrow biopsy just two days ago. I know this is a long long shot, but could Late Onset Tay Sachs disease also be something we should check into? I am the only person known in my family to have EVER had a clotting disorder or epilepsy. I was searching info on lupus and stumbled upon it. Many of the symptoms associated with it sound strikingly intermingled with not only my blood but also my neuro problems. All I'm wondering is would I be a fool to bring this up to my hematologist? Yes, if it's not already apparent I am a medical professional, but I don't want to come off as Ms. Smartypants by asking even though I've got the IQ to back it up. I like to keep my intelligence level to myself for the most part. ANY FEEDBACK from anyone would be greatly appreciated. Ever since the word leukemia came into my vocabulary I've been in a emotional spin even bookworms are susceptible to that. Any advice or opinions will be GREATLY welcomed!
Thanks,
Gypsyspirit28