Medical Gaslighting: My Doctors Ignored Me - Ben | Myelofibrosis | The Patient Story
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- čas přidán 25. 07. 2024
- Battling fatigue, night sweats, and the burden of symptoms, Ben knew something wasn’t right. Meet Ben Hohenbrink, a resilient husband and father of two, whose journey with myeloproliferative neoplasms (MPNs) began with a diagnosis of essential thrombocythemia in 2012. Ben's story took a challenging turn when he was diagnosed with myelofibrosis almost a year ago.
Despite initial dismissals from doctors, Ben's self-advocacy and determination led him to seek second opinions and find a supportive medical team. His perseverance has not only improved his quality of life but has also made him a strong advocate for others facing similar health challenges.
Ben's experience highlights the importance of self-advocacy, seeking second opinions, and the impact of a supportive medical community. Join us as Ben shares his journey, from the initial symptoms to navigating treatments and advocating for change in the MPN community.
#cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory #myelofibrosis #MPN #myeloproliferativeneoplasms
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Video Chapters
0:00 Meet Ben
0:30 Flags in Ben’s Bloodwork
9:10 Initial Symptoms of Myelofibrosis
12:00 Ben’s Diagnosis
18:30 Myelofibrosis Treatments
24:00 Importance of Self-Advocacy
29:00 Having Gratitude in the Midst of Trials
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How I Found Out I Had Myelofibrosis - Ben | The Patient Story
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“Deal with it!” I would think since he had cancer before they would be more aggressive the next time around.
I thought that, too.
I had a similar experience, Ben. I had ET for at least 7 years before being diagnosed with MF. I had to do a self-referral to receive both diagnoses. Self-advocacy and lots of research have been key for me too. Best wishes to you. My husband and I are farmers, too.
🙏 ❤️ 🙏
For You
Always & Forever
I am still seeking a diagnosis after more than 3 years. I suddenly, and I mean very suddenly became completely incontinent in 2021 when all of this really took a bad turn. I was 36 at the time and the urologist I saw said "Well you're very young for this. How do you feel about wearing Depends?" I told him I'd prefer to just figure out why and surprise....3 years later I still don't know why and I'm still incontinent among many many many other things. I hate the medical system.
Do you have back problems?
I became incontinent when in my. Late 50’s, no doctor has said a word about it when I told him. Just totally dismissed it…. Have you ever gotten any answer for cause or correction?
Try purchasing your own antibiotics do a 1 month course see if any changes. You may have a mycobacterial infection almost impossible to diagnose
How sad!!! Keep advocating and try other docs. I am so very sorry!! Prayers for you!!!
Have you tried d-mannose?
Deal with it, what a disgusting way to treat another human being , Doctor or no Doctor , what right does anyone have to treat someone so horribly. I had a doctor slam her stethescope down on her desk and yell at me to shut up and just accept what she was telling me, wasn't long after that incident she had a Nervous Breakdown and lost her position. Made me think about how rotten she had treated me, she was suffering inside her own self and here she was yelling at me to just accept what she was trying to convince me of regarding my symptoms?
She was very wrong to yell at you & I'm sorry she did that but if she ended up having a nervous breakdown try to imagine how the poor woman must've felt, it shows she's a human being just like we both are so try not to bear a grudge but I know it's hard & God Bless
Thank you for your information. I wish you all the best.
Beautiful cow!
Thank you great info.. just been diagnosed with ET and have appointments with hematologist next week. My question to you how do I go about finding an MPN specialist? Is there an organization that lists them in each state? Thanks Again Carole
There are tremendous resources available to the people who have money.
I go to the v.a. and they gaslight me.
My mom had cervical cancer, i had an abnormal pap in 2013 or 2014 and the v.a. refused to get me a second pap appointment.
Now i am tired all the time, I've had a low grade fever since April 5th and when i go to the v.a. (went to community care appointment then to the Denver rocky mountain regional v.a. clinic) both refused to speak to me about the low grade fever and BOTH directed me to the mental health department, one prescribed antidepressants.
Still tired, still have a low grade fever.
So now if i go to the dr, it's not the v.a. which means $$$$$$$$$$$$$$$$ that we don't have.
Good thing I believe The Holy Spirit when He said that to die is gain!💜💚🧡🧡🎉🎉🎉🎉🎉🎉🎉🎉
Deal with it, deal with it? WTH.
Curious to see how many of you showed poikilocytosis, anisocytosis and/or teardrop cells in your blood?
How high were your platelets when you had a bone marrow biopsy the first time?
Mycobacterium bovis......hes literally taking pictures with cows...the medical system has failed us to protect itself from lawsuits
Don’t worry guys, karma is coming, it never fails! Ben, I wish you the best, you will be in my prayers.
What is ET?
Essential thrombocythemia