Advice on potential leukemia diagnosis


Patients Leukemia

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Hello everyone! I wanted to come on here for some advice regarding the diagnosis of leukemia and different possibilities. I have been having medical issues for almost four years now, but they progress every year. I was diagnosed with Vasovagal Syncope which is a sudden drop in heart rate and blood pressure. I have been tested for chrons, celiac, Addison's disease, Lyme disease, and more and all came back normal. Over the past year, my TSH levels have been all over the place (being an 8 one month and progressively going down) but my doctor does not want to diagnose me with any thyroid condition yet due to my age. Although I hope I do not have leukemia, I am dumbfounded on how I have gone through a plethora of medical tests to have them all come back normal or inconclusive.

Recently I have been getting really bad night sweats accompanied by chills, extreme brain fog to the point I forget what I was talking about in the middle of speaking, pinpoint itchy bumps/rashes all over my hands, extreme fatigue during the day but an inability to go to sleep at night, random nosebleeds, extreme headaches with ringing ears, weight loss but always looking bloated, and painful joints with loss of muscle control. It's a lot, I know. But all of these symptoms that have progressed over the years continue to point more towards leukemia every time.

The issue is however, I get blood work done very frequently and the most recent time (November 28th, 2020) I got a full basic metabolic panel done with normal results, and on January 15th of 2020, I got a CBC done with good results. I know January of 2020 was a year ago, however, I feel like my blood count couldn't change that fast? I was wondering if it is possible to have leukemia without any signs of it in blood work. I am completely stumped at this point, and I am about to give up on medical testing and push through what I have going on for at least a couple of years. As I'm sure a lot of you know, being unsure of what is wrong with you is extremely tiring and stressful. I am scared to ask my doctors to do any tests regarding leukemia or even bring it up for fear of looking like a hypochondriac. When I brought up my concerns to my mother, she laughed in my face and my siblings told me I was overdramatic. 

I am an 18-year-old female and a full-time freshman in college. I feel like that sentence says enough about the amount of stress I am going through without scratching the surface about my family life. If ANYONE would be willing to give me advice I would appreciate it so much. I hope everyone is having a wonderful day/night.

Beginning of the discussion - 2/12/21

Advice on potential leukemia diagnosis

• Community manager
Posted on

Hi @sophianicole‍, thank you for opening this discussion and sharing what you've been going through. I can't imagine the stress you've been under between school and your health. Feeling misunderstood or not taken seriously by those close to you and your medical team surely doesn't help. Let me tag some other members here in our leukemia group who can potentially share some insights.

Hi everyone, how are you doing? Can any of you share a bit about your diagnosis experience with leukemia? What kinds of symptoms did you have? What were you test results like? Can you share any thoughts or advice with sophianicole?

Feel free to share any thoughts here!

Take care,

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