- CASE FILE
Married, 49 year-old, mother of 2Several diagnosed medical conditions with unexplained, progressing muscle weakness and balance problems.
ABOUT THIS CASE FILE
Wow, this is tough, even my diagnosed conditions don't show up. I have Relapsing Polychondritis, Lupus, Sjogren's and a genetic birth defect of Ocular Cutaneous Albinism. I have been going to experts and specialists including the...
Wow, this is tough, even my diagnosed conditions don't show up.
I have Relapsing Polychondritis, Lupus, Sjogren's and a genetic birth defect of Ocular Cutaneous Albinism.
I have been going to experts and specialists including the Autoimmune Center of Excellence in Pennsylvania, Rush University Medical Center and Northwestern University. I have had MRIs, EMGs, lumbar puncture, muscle biopsy and more lab tests then I knew existed. Still, no one can explain why my muscle are getting weaker, especially my right arm. At times my body will not respond. I want to pick up my leg and it just won't go. I also am having balance issues. If I put one foot in front of the other, I just tip over. I don't feel dizzy, I just fall. In the last month I have also started feeling like I am going to fall backwards as well. I have been told that my diagnosed conditions can not account for these specific symptoms
I also have trouble swallowing which could be caused by the Lupus or the RP. Things get stuck low, like right before my stomach. I have an endoscopy scheduled to look into this more in depth.
I am taking: Plaquenil 400mg a day, Methotrexate 15mg a week, Prednisone 7.5mg a day, Folic Acid 2mg a day.
It is so tough to be a good mom and partner when your body just isn't working. This is affecting my entire family and the stress of these undiagnosed conditions and uncertainty of my future health just make the pain of my autoimmune conditions worse. Although my family is super supportive, I have a disabled daughter that I can't care for and feel I am letting my family down.