Hey, I’ve been on my medical journey since I was 11 (currently 20) and have had no success in finding out why I’m neutropenic. In the past 3 years I’ve had increasingly more symptoms. I have all the symptoms and most blood test results of a lupus diagnosis but my doctor won’t say I have it. I’m super frustrated and was wondering if anyone had a similar experience?
Hi! I’m so sorry you’ve been experiencing all of that! To clarify, you’re experiencing neutropenia symptoms but your doctor isn’t diagnosing you with it?
no I was diagnosed with neutropenia when I was 11. I’m now 20 and I’m pretty positive I have lupus. I have all the symptoms and most blood tests results of lupus! But my doctor won’t diagnose me with lupus. My face and ears feel like they’re on fire daily
So sorry to hear this! I can relate to your frustration! 2 yrs ago I was experiencing severe cases of anemia and low platelets! 3 hematologist couldn’t figure out the cause😢 I diagnosed myself. I had a series of test done from bone marrow biopsy, CBC’s and colonoscopy! Id had enough!!!! After discussing my issues with my husband I ended up diagnosing myself! The cause was due to the neupogen injections! I stopped taking it back in Nov 2021 and now my blood counts are normal.. minus the neutrophil count. But I feel great! Hopefully you can find answers soon 🙏🏾🙏🏾
thank you for your response! I don’t take neupogen as my bone marrow produces the neutrophils but once they leave the bone marrow my body destroys them for some reason😭I hate that we have to live like this
not sure where you live, I’m located in the Maryland/ DC area. I can recommend some folks if you live in or near this area if you like?
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