I was diagnosed with EM in July but was also experiencing other symptoms that my hematologist did not think were associated with EM. As many of you have experienced, all of my blood work looked great (aside from a couple of elevated hematocrit, which has since reduced, and a steadily elevated MCV) until my very last test. I tested positive for the following antibodies: anti-b2 glycoprotein I IGA and Anti-cardiolipin IGN, which are associated with antiphospholipid syndrome. Additionally, my lipoprotein was high, which I have since found out is associated with antiphospholipid syndrome.
My hematologist said he thinks this is what is causing my EM, and I was wondering if anyone else had a similar background or knew anything about EM and these antibodies. From my research, antiphospholipid syndrome is usually associated with connective tissue diseases and lupus. So far, my blood work does not indicate these but some of my symptoms (photosensitivity, rashes, and joint pain for example) do. I’m relieved to have more clues but unsure if the two are related.
If your MCV is elevated it can indicate a B12 deficiency, did your hemotologist consider this? MCV=mean corpuscular volume, is an indicator of relative size of red blood cells. Macrocytosis (enlarged cells) can occur with a B12 deficiency, though these days is less likely since the folic acid used to enrich flour has a masking effect. Are you celiac or eat Paleo, avoid wheat/gluten and processed foods? Then it’s more likely a B12 deficiency will show an elevated MCV.
Was your B12 tested? Deficiency symptoms can occur even when low normal. Healthy people should be above 600 pg/mL; below 500 neurological damage can occur. Don’t supplement B12 for several months before testing or results can be normal even though it is not. There are additional tests that can be done if a B12 deficiency is suspected: methymalonic acid (MMA), homocysteine, and antibodies tests for pernicious anemia.
I had a late diagnosis of B12 deficiency, caused by pernicious anemia. I believe this is what caused my EM. My B12 was barely below the 200 cutoff used by my HMO and I was very, very ill at that point. I was eating wheat, so my MCV was normal. I had other neurological symptoms in addition to foot pain: hair loss, waking with numb/tingling hands and feet, shooting pains in my legs, insomnia, and moodiness. Took several months for my doctors to finally figure out what was wrong.
My B12 was normal (475) as was my folic acid. Thank you for the information
Health professionals like Sally Pacholok, RN believe below 500 is the gray area where neurological damage can occur. She and her doctor husband wrote the book “Could It Be B12? An Epidemic of Misdiagnosis”. You may want to keep an eye on it, perhaps get retested in 6 months or so.
Thanks so much! Somehow I missed the 500 in your last message. Will definitely keep this on my radar