Pernicious anemia fucking sucks. You know what sucks more? Megaloblastic Anemia.
Jesus, Joy, you don’t do things by halves, do you? If they’ve come up with an answer, do they also have a cure?
It’s immediate treatment of the b12 and folate deficiency to try and stop the damage being done to my nervous system and heart. Normally it’s injections but given I’m a high risk for anaphylaxis due to the preservation methods used to keep these injections stable they’re running frantic trying to find an answer that won’t further stress my heart. I’m taking massive doses of oral supplements to try and slow the free fall but blood transfusion may be necessary to stabilize things in the interim, which is not also without its risks but given my blood cells are prematurely self destructing and potentially damaging my kidneys and liver (testing ongoing) we’ll do whatever it takes to beat the absolute shit out of this thing.
To clarify for some folk, this is not new. This is the condition I’ve likely been living with all my life and it has been gradually getting worse over the years until it hit critical point when the symptoms start manifesting in god awful terrible ways and become incredibly dangerous and hard for doctors to ignore. People can live their lives for some 20 odd years with pernicious anemia, always feeling sick, always fatigued, plagued by general malaise and various mental health symptoms, and never get diagnosed until it’s too late.
If I hadn’t been pushing tooth and nail for a b12 serum test because my dentist mentioned my mouth ulcers could be caused by b12 deficiency, none of these follow up tests would have been carried out and my condition might never have been found and I’d have continued to worsen, being told my chronic fatigue syndrome was simply worsening until it eventually killed me.
So for the love of god if you’re reading my blog cause any of my symptoms ring a bell for you, get your b12 levels checked, not just thyroid or basic iron test, a full b12 serum and folate test with a full CBC blood test for comparison with a methylmalonic acid (MMA) test and also a mthfr test (mutation that stops you absorbing b vitamins)
Rule this shit out before you let anyone diagnose you with chronic fatigue and brush you aside for the next ten years cause if it’s a chance it’s malingering pernicious anemia you have a finite window of time for treatment before damage becomes permanent and good god if I can save anyone else from going through this, well, it won’t be worth it because there is nothing worth this, but it’ll give me solace.
Take care of yourselves loves, advocate for yourselves, be fierce, be relentless. Thrive. You deserve it.