First Symptoms & Treatment Options in 2024 | Myelofibrosis | The Patient Story

[@bama100904]

After much insistence at the GP, I was referred to an orthopedist. I was walking with a sore hip for 3 years. In January of 2024, the orthopedist said it was not a worn hip but something else she could not fix. To make a long story short, I was eventually diagnosed with primary Myleofibrosis after a few tests. I now use Ruxotinilib (Jakavi) in combination with blood thinners and vitamin D3. I am grateful to my oncologist in Nijmegen (NL) for helping me well. The only problem I have now is that I still get tired easily. The Hb in my blood is rising slowly. I hope to be able to return to work in September.

[@grammyb5216]

♥️🙏

[@sijojose8672]

Hi, are you ok now ?

[@RITAD1]

I just was diagnosed October 2024. Waiting to see what type I have. I had all the symptoms except the fever. Im also a spinal cord injury incomplete t5 to t11. Fractured t6, t8 and l4 in September of 2024. It took for me to get diagnosed when my mental health broke down and i went inpatient. Doctors listen but not fully. I asked for bloodwork to be done for years to find out why i feel so terrible daily. It's sad when our healthcare system is broken.

[@MyHumanSuit]

I've been getting sicker and sicker and I've had all those symptoms. I've told all my doctors but they never take me seriously. I've had so many health conditions but I just don't have the insurance or the money to get anybody to take me seriously. I've had a long clots in my lungs starting at age 31. I get fractures when I walk. I can't keep my folate up etc.

[@seekthetruth1485]

Let's talk about how Doctors Don't listen...

[@kunalbang09]

My mom has primary myelofibrosis, she gets these purple like spots on her skin and easy bleeding, I'm from India where should I get her checked? She's 51 and I'm scared to lose her, please reply

[@ashok1502]

My dad has lived with MF for close to 30 years now. With better management, your mother can live a good life. Please take her to a good Hematologist who is also trained/stuidied in BMT(Bone Marrow Transplant).

[@kunalbang09]

@@ashok1502 hello sir, we'll definitely take her to expert doctors, she's currently on Jakavi medicine but the cost of the medicine is too high around 20k per month and will reach 50k per month when the dose is increased, how did your family manage the cost? Did your dad received a BMT?

[@chrisberry9017]

I send my love to both you and your Mum. I was diagnosed with myelofibrosis last autumn, and it’s certainly a worrying time. I do hope that you’ve found help nearby, and that treatment is progressing.

[@parthipanramdas6836]

​@@ashok1502hi

[@kitchenarbabvlog]

Hello 👋 Friend Watching Here Your Amazing Video 📸 Don't Loose Hope May Allah Protect You All 🙏👍Have A Good Weekend 👋

[@robertfield5904]

cancer feeds on (eats) sugar and processed foods Exodus 15:26, Psalms 30:2, Psalms 103:1-5, Isaiah 53:4-5, Jeremiah 17:14, Jeremiah 30:17, Malachi 4:2, Matthew 4:23-24, Matthew 12:31-32, Revelation 20:11-15,

[@mailin001]

it's deadly