It all started a couple of years ago. I became really fatigued and not feeling well. I would get these weird rashes on my arm. At first I thought I had shingles like before. Then the fatigue became debilitating. The doctor did a test for mononucleosis. I have had mono twice before. All my bloodwork was good. Along with the fatigue and rash, I was struggling with very dry skin and mouth. My kidneys were being damaged, and we couldn't figure out why. We looked at my iron levels and even my ANA thinking autoimmune. Everything came back fine. We thought for sure it was Lupus. I was referred to a rheumatologist, who ran more bloodwork. It was all good. I was beyond frustrated at this point. The rheumatologist recommended that I get the rash biopsied. I was referred to a dermatologist and they performed 3 different biopsies, 3 different times, all coming back inconclusive. This was all over a time span of 2 years. I was beginning to think all of this was in my head. I became very depressed.
I looked into a different rheumatologist begging for answers. Everything pointed to Lupus. She ran a couple different test that no one had ran before: Avise and Vectra Score. My Avise test came back with no possibility of Lupus. She ran it twice to make sure. My Vectra Score came back on the high side of low. She ran a lot of other bloodwork and found that even though my iron levels were at the low end of normal range that my iron saturation was low. Also my Vitamin B was low. Both of these explained my fatigue and are signs that most rheumatologist don't know are a sign of rheumatoid arthritis. My rheumatologist also has RA so she understood a lot more. She had me go for x-rays since my ANA was coming back either negative or a weak titer positive. She had x-rays performed on both my hands and feet. Finally after a very long 2 years of struggle I had a diagnosis. I had stage 3 seronegative rheumatoid arthritis. The x-rays were conclusive and she took the time to show me on the x-rays the damage that was being done to my joints. I could've hugged her. She started me immediately on treatment. Had I not found a different rheumatologist, I would probably still be going to my dermatologist trying to get the rash at the right time to get a diagnosis.
I want others to know my story. I hope this gives you the motivation,
if you are facing medical problems and your doctors aren't listening to you, don't give up. There is a doctor somewhere who knows what you are going through and is willing to think outside the box and not run the standard blood test. It's not in your head. You just haven't found the right doctor yet.
Comments