I’m taking low dose aspirin and hoping to see a MPN specialist soon to get a BMB. My insurance has to approve it bc hes out of network. In the meantime my symptoms are getting worse it’s been 7 mos on aspirin only. 🙏🏼
May 17
And curious what, if any, meds you are taking?
May 17
I have a supposed CALR mutation and both my platelets and b12 are elevated. I am currently wait and see for a couple of months. Trying some non tradition things and will let you know how they work out!
May 17
Essential thrombocythemia (ET), including cases with a CALR mutation, can cause dizziness and ringing in the ears (tinnitus). These symptoms are often linked to increased platelet counts, which can affect blood flow and circulation in small vessels, including those supplying the inner ear and brain.
ET-related headaches Show Full Answer
Essential thrombocythemia (ET), including cases with a CALR mutation, can cause dizziness and ringing in the ears (tinnitus). These symptoms are often linked to increased platelet counts, which can affect blood flow and circulation in small vessels, including those supplying the inner ear and brain.
ET-related headaches and neurological symptoms like dizziness can occur due to:
- Abnormal platelet activity
- Reduced blood flow from clotting or thickening of the blood
- Microvascular disturbances caused by high platelet counts Regarding Vitamin B12 and folic acid (B9) — these are actually supplements to be cautious about with MPNs, rather than helpful ones.
Both B12 and folic acid play a role in red blood cell production. People with MPNs often already have elevated B12 levels, and taking additional B12 or folic acid supplements could potentially stimulate further blood cell production, which may worsen symptoms rather than relieve them.
It's really important to speak with your hematologist before taking either of these supplements, as they could interfere with your treatment goals. Managing platelet counts through prescribed treatments is typically the most effective way to address symptoms like dizziness and ringing in the ears.
May 17