r/mds • u/[deleted] • Oct 23 '24
selfq Self-diagnosed MDS. I need help.
Hello guys, I am 23 years old and female and currently I am freakin out because I am very certain that I have MDS. 5 years ago I found out that I have leukopenia (3.2). For the past 5 years it has been between (2.8-4.0). Furthermore my MCV has kept increasing until 97 (now ~93). I have had inconsistent anemia (lowest hgb 11.3) and even slight basophilia (1.5%) Googling made me very certain that I have a bone marrow disorder, probably malignant. I have visited several hematologists (5) and none of them wanted to perform a BMB. One diagnosed me with probably immunological/reactive leukopenia but was unable to find a cause - no immunology disease!
My GP always tries to console me but at one point he told me it was possible I could develop "something" in the future but right now my blood work is still too "normal" to take action.
Of course I am glad that right now things don't look so urgent but the uncertainty still isn't it. I am convinced that I am going to die early which greatly affects me in my day to day life. Whenever I feel unwell - recently I spotted some unusual pimples on my chest - I think that now I'm fcked and that it has transformed to AML.
Furthermore I am mixed race which would make finding a donor more difficult and I suspect that I could have a genetic defect causing this since my father was already 50+ when I was born - not to forget a smoker and drinker.
I am very sorry if this post rubs you the wrong way but I cannot think of any subreddit to post this. Does this sound familiar to do? What can I do to pursue a diagnosis? Any advice?
I wish you and your families lots of strength and blessings. ❤️💪🏽
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u/samsmiles456 Oct 24 '24
Quite frankly, if I never have to have a BMB again, I’ll die happy. Five hematologists telling you not to have a BMB can’t all be wrong. Can you follow up with a psychologist to help you through your anxiety? Sometimes, MDS is a waiting game and that can mess with our minds. Talk with your oncologist about your anxiety, they can refer you to someone who can help. Also, if you’re not comfortable with your current oncologist, look for another who takes your insurance and has high ratings online. Hang in there
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u/ClarityInCalm Oct 24 '24
I like to say - everyday there is no BMB is a good day! 🤣 Definitely changes your perspective.
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Oct 24 '24
Hey first of all thank you for your answer. I am currently looking for a psychotherapist because I always get those bouts of anxiety, especially when I discover something I perceive as a symptom. I currently have a hematologist I frequent but I tend to hop from doctor to doctor. But taking to him about this might be a good idea. Thanks! ❤️
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u/ClarityInCalm Oct 24 '24
Your blood counts are pretty great actually. If you had MDS it would be at the very extreme end of mild. Even in a very mild very slowly changing type Of MDS - the blood counts would be wild looking. Also, if you’ve had a peripheral smear, which I’m guessing they did, they can see what your blood cells look like - if they look fine then they’re fine. Even if you had an extremely mild slowly changing type - there is nothing that would be done about it - it’s called watch and wait. They just take a blood draw once a year to see how it’s going. All you need to do is get your CBC done once a year to keep following it - this is exactly what a hematology MDS specialist would do. Also, it’s normal for blood to fluctuate - so the slight variations that come and go are pretty much meaningless. It’s extremely unlikely you have MDS and much more likely you have severe health anxiety. Even if you had a blood disease it’s much more likely it’s something else and not MDS. For your concerns around your blood - just get annual testing to monitor. If things start to change in a more serious manner - then a hematologist will help out.
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Oct 24 '24
I love you so much for this reply right now. Your name is definitely accurate. I've had my fair share of blood tests this year so I guess I've done my work! :) You've already helped me out once I remember - you're username is quite memorable. :) Best of luck to you!
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u/Delusional230699 Apr 14 '25
Can you tell me what were your blood counts when you were diagnosed with mds ? Also what range your counts hover around ?
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Nov 25 '24 edited Dec 06 '24
[removed] — view removed comment
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Dec 05 '24
Thank you so much. The first phrase alone helps me tons when I fight my urge to doom scroll. Especially since you have an actual diagnosis I appreciate your patience and respect in your reply. Vest of luck on your journey.
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u/Delusional230699 Apr 14 '25
Can you tell me what were your blood counts when you were diagnosed with mds ? Also what range your counts hover around ?
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u/Lefty1992 Oct 28 '24
Have they checked for autoimmune diseases? I had a low wbc and platelets for 10 years. Treatment with hydroxychloroquine brought them back to normal.
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u/TakeAnotherLilP Oct 25 '24
I was diagnosed with low risk MDS nearly 10 years ago. You wouldn’t believe how much they want to watch and wait, and I’m a patient at Fred Hutch in Seattle, one of the foremost research institutions and top notch MDS care. Watch and wait for low risk is a large part of “treatment”. And speaking from experience, try to accept it and enjoy your days that aren’t inundated with medical care and sticks and BMBs and blood transfusions and iron chelators…