The story of Karolena
My case started 11 years ago when I felt very ill and started having muscle and joint problems and for years I was told I was too young it was just stress nothing more. I knew my own body and kept fighting. In 2009 I was diagnosed with monoclonal gammopathy of undetermined significance (MGUS) that was the first thing that set me off to know there is more going on and it wasn’t just in my head as they all said. From there I saw four to five neurologists all acknowledging there was abnormalities and also saw probably 6 rheumatologist who at first acknowledged there was something more in my blood work as well as my symptoms but when it didn’t turn out to be their typical arthritic cases or lupus they just told me I was an exceptional case for blood work. Hence in July of 2014 I was very lucky to meet my new GP who listened and actually believed me and in January of this year I was blessed to meet a new oncologist hematologist to monitor the monoclonal gammopathy and this man spent almost two hours with me explaining all my blood work from over the years and told me there is something different going on here. He then said he wanted to send me to another rheumatologist I just looked at him rolled my eyes because of past experiences and he said to me I understand our hesitation, but this man is somebody who thinks outside the box and he said I have my suspicions too but I want you to see him. In June I met my current rheumatologist who sent me through the ringer so to speak for tests and also explained at the time he suspected Schnitzlers Syndrome due to all my symptoms the rash some other factors in my blood work but especially the IgG component I had. I was supposed to start in September on the anakinra but there’s been some major hiccups and I’m still currently waiting to start. Kineret support here in Ontario has been working diligently to get this all going but my insurance company has thrown in another wrench. Each day is getting worse and worse for me. I am truly worried about this disease because another one of the main indicators something was off was I had a high positive teiter of ANA which my oldest daughter has now tested positive for as well and has similar symptoms starting. A light needs to be shed on rare diseases all over the world.