[Karina C]

I was diagnosed with multiple sclerosis in 1998 and thought the disorder would be my challenge in life. This blood disorder is challenging on a whole new level. In January 2014 I became ill with a virus that I couldn't seem to shake. I started having significant muscle weakness, more difficulty walking and increased muscle pain. I thought this was an MS exacerbation, so after consulting with my neurologist I did a prednisone tapper. I felt a bit better while on the meds, however as soon as I finished, I began having shortness of breath, rapid heart beat and felt like I couldn't breath. I tried to push through, as most things are a struggle with MS and I figured I'd just have to deal. Things kept getting worse, until the point that I had to lay down in bed to allow my heart to calm down between brushing my teeth and my hair. I went to my GP who found my HgB to be 5.9. I was sent for a 2 units of PRBCs. A few days later my HgB was up to 7.6. My doc sent me for another 2 units the next week. When I went to his office 3 days later my HgB was down to 7.4. And so began the referral to hematology. Since February 21st I've been to the hematologist several times a week. I've had every blood test that could be done as well as a bone marrow biopsy. Things have not improved. I have been transfusion dependent since the very beginning, receiving 2 units every 10-14 days with no definitive diagnosis. My bone marrow biopsy showed hypercellularity in March, however I've shown no recovery. I was referred last week to a specialist at Northwestern University who will be repeating my BMB next week. My reticulocyte count has dropped to .2% and based on the other tests she believes the new BMB will indicate AA or MDS. In the mean time, I have been taken off of my MS meds, as the Tecfidera that I was on can cause decreased white blood counts (which have fluctuated between 3.4-5.9 over the past 5 months). I'm so nervous about a new diagnosis, and I'm not sure how to manage both (a lot of MS meds are immunosuppressants, however they don't react well in the presence of other immunosuppressants, which my newest hematologist is talking about). I'm looking forward to a definitive answer on what has been so destructive to my bone marrow as well as some idea of how to live as well as possible, but I am so very nervous reading about the likely treatments and how they will affect my MS. I'm so happy to have found this site, and look forward to reading about other folks journeys as well as having other people who have been where I am. All the best to all.