On October 8, 2015 I had a follow up appointment with my hematologist/oncologist to find out the results of my bone marrow biopsy. Up until this point, it’s been a huge question mark as to what was going on with my health. Let me take it back a few months…
Around the end of June, I had scheduled a regular annual check up exam, at which time I noticed some bumps on my forehead, that looked a bit like acne so I thought nothing of them. My doctor received my blood test results and noted that my white blood cell count was low, but due to all the other levels being normal, that the skin ordeal and low white count was likely due to food allergies.
I’m no stranger to food allergies, after living about 20 years of my life completely red meat and dairy free due to allergies. So I tried the elimination diet, and nothing changed. The bumps on my forehead later turned to strange sores on my nose and cheek. Nothing too gross, but definitely not acne. I went back for more blood work to check on my levels, and my white blood cells were still low.
During this time, I had made an appointment with a dermatologist, who was clueless to what my rash was (which had now spread to my back, chest, and some on my legs). He prescribed an antibiotic saying it was likely just folliculitis, and sent me on my way (without a skin biopsy). Well, a short while after, I was running a fever, had horrible sores on my tongue making it almost impossible to eat without being in intense pain. I went to the emergency room, as I was getting worse, fast. They ran all sorts of tests, thinking maybe I had Lyme disease or something of the like. All the tests came back negative, and the doctor there just said to continue my antibiotics.
I had a follow up with my primary care doctor, at which time, she told me to stop the antibiotics because clearly I was allergic to it. She prescribed a different medicine that should clear up my skin. Within 2 days after stopping the first antibiotic, my tongue was getting better, so thankfully we did discover I was allergic to it. The new medicine I started, and within just a couple days I started getting hives. They were all over, and travelled from one place to another. It was miserable! I emailed my doctor and she said to just stop that medicine completely as well.
So, getting extremely frustrated, things were getting worse, and again my blood counts were low (mainly white counts). So we decided to head back to the emergency room to see if they would admit me and run all kinds of tests to finally figure out what was wrong. This time, they did admit me. I spent 3 days in the hospital and had blood test after blood test, yet still no one would biopsy my skin. My blood tests kept coming back negative for all sorts of ailments and diseases they tested me for, and now this time, my CBC (complete blood count) showed lowered white, and platelets. I met with an infectious disease doctor, a hematologist, and a primary physician while at the hospital. Each one was stumped as to what was going on, but they all agreed a skin biopsy would be the easiest route to tell us exactly what was going on with my skin. As for the blood counts being off, the referred me to another hematologist/oncologist for a bone marrow biopsy.
Back to present time…
So I’m waiting with my husband and daughter to find out the results of the biopsy. My doctor came in and said that what it looked like from the biopsy and aspiration was something called Myelodysplastic Syndrome (MDS), however he wasn’t convinced that was the case. Typically, this disease affects people over 60, and very rarely someone my age. Since this was the first I’ve heard of this, I didn’t exactly know what we were dealing with, so it wasn’t too scary of a diagnosis. He wanted me to come back in a week after they’d reviewed the lab work and sent it in for further testing. Fair enough, I figure they’ll review it and rule out this elusive MDS.
I had a skin biopsy done as well, and we’re waiting for the results for that. In the meantime, I began researching MDS and quickly came to the realization that what we were dealing with was quite intense, and now…. I’m concerned.