- CASE FILE
18 Year-Long Autoimmune Neurological Disease
ABOUT THIS CASE FILE
In early 2001, I had what was described as a "severe and unusual case of mononucleosis." It lasted for almost two months. It turned out that the mononucleosis triggered something that completely changed my life.
Even though I thought I was better the symptoms then came back again on a monthly basis. This lasted for years, and each time the symptoms came back I lost a little more motion, balance, and coordination of my body. I do know that is a progressive autoimmune/neurological disease that continues to this day. Due to this, I now use a power wheelchair. My symptoms include spasticity in my limbs and tongue, numbness in my toes, muscle weakness, loss of balance and coordination, dysarthria, loss of fine motor control, overactive bladder, clonus and tremors, and irritable bowel syndrome. It sounds like MS, but I have been through the battery of tests for it at least twice, and everything came back negative. Due to these symptoms, I have lost the ability to walk, dance, and eat many things that used to bring me joy. The bathroom-related symptoms can have me rushing to the bathroom up to 40 times a day, which is exhausting and puts me at an increased risk for a fall.
For 18 years, I have gone without a diagnosis, which could potentially lead to treatment. I have seen over 100 doctors, including those at Harvard, New York Presbyterian, Weill Cornell, The Cleveland Clinic, and Yale New Haven Hospital. I have had 30+ hours of MRIs, 12+ hours of EMGs, exomic and mitochondrial DNA testing, three lumbar punctures, allergy testing, and testing for: MS, porphyria, Hereditary Spastic Paraplegia, rheumatological testing, Charcot Marie Tooth Disease, to name some of the hundreds of diseases I've been tested for.
Currently, I am taking Gabapentin, Intravenous Immunoglobin, Tizadine, Dantrolene, Oxybutinin, and Medical Marijuana. This combination only provides a small amount of relief. In the past, I recall trying Baclofen and Flexiril, which did not help much.
I have seen neurologists, rheumatologists, gastroenterologists, allergists, immunologists, geneticists, to name a few. I have had tests performed for diseases not seen since the 1800s.
I am a NYC Public School Special Education Teacher, and I am constantly worried that if my disease continues to progress, I will have to stop working which I do not want to do. I want to continue to help my students for as long as possible.
I am desperate for help and relief as my illness progresses. Every day that passes is another day where my disease is allowed to progress unchecked. I need your help today.