Well, except for the extremely low white blood cell count (2 something for those who know what that means) Also anemia.
I was sent to a hematologist, who had me do a bunch more tests and a bone marrow biopsy.*
Do I have cancer? Some rare disease that only affects 1 in a million people? Am I just missing The Vitamin?
I saw the doctor this week because she got the results and … she had nothing. I understood why she was happy - probably most of the time she’s telling people they have leukemia, and to have no news is good news. Well, my bone marrow is a little dense.
But it’s frustrating to me. I’ve had several problems in my life that took work to get diagnosed. And some of them were odd: nitrous oxide stays in my system for long periods of time, which cause dizzy spells. Myasthenia Gravis happens to somewhere between 1 in 100,000 and 1 in 1,000,000. And mine was asymptotic except for tiredness.
So, we’re at the “who knows, we’ll watch and see if something changes” stage. Which reminds me that I have almost but not quite lupus - I got tested two years in a row with my results coming in just under clinical levels.
* bone marrow biopsy - I’ve heard that it’s painful, and they put me under light sedation for it. But I never felt any pain. Not even after the anesthetic wore off. Mom always called me the dead end kid. Guess she was right
So sorry you don’t have a diagnosis, Zyada. And you’ve tried all of the things so far!
My best friend has been going through something similar with tests-without-answers since 2021, so I’ve been on this journey with her, and it’s just…exhausting. On top of the exhaustion the actual ailment has caused.
I hope you feel like you’re at least being listened to and advocated for, and your doctors are as frustrated for you as you are.
Having an undiagnosed condition can be frustrating, but if you feel good then I would write it off as “I’m fine for now”. Watchful waiting is common when doctors see unusual test results that don’t really point to anything. Consider yourself lucky they didn’t find anything and enjoy the time you have above ground on this planet.
I don’t believe her. Okay, I believe she FOUND nothing, but I’m quite convinced that there is something. Your body didn’t decide one day to become anemic and have a very low white blood cell count. Keep pursuing it. See someone else and then, if necessary someone ELSE until you get some answers. Also, study up on your symptoms. An educated patient is part of his own cure.
Your symptoms sound a lot like. Mrs Magill’s when she was diagnosed with hairy cell leukemia, except it’s apparently pretty obvious when you examine the blood. How’s your spleen?
Mrs Magill had two - one in her oncologist’s office and the other under general anesthesia. She said she’ll never do the latter again for something so minor.
I’m so sorry that you haven’t been able to get a diagnosis. My daughter has been going through much of the same. She’s got high platelets, very low, if non existent iron, vitamin D deficiency. She’s had a bone marrow biopsy, colonoscopy, labs like crazy, and now the doctor is suggesting an endoscopy. She may or may not have it in the near future. She thinks she’s first going to keep a journal and see if it’s possibly food related. She’s tested negative for celiac on a few occasions, but was told maybe she just doesn’t have the enzymes?She’s seen different specialists.I understand how very frustrating it can be, and I hope you get answers.