Four years ago, I was diagnosed with an incurable, progressive neuro-endocrine disease after starting to convulse in the lobby of a neurologist's office. I had been experiencing headaches, hand tremors, difficulty expressing myself and what could only be described as a delay with my motor skills. Outside of a common thyroid disorder, I was in the best health of my life. Admitted to the hospital, the convulsions lasted for 14 hours and was followed with stroke-like symptoms. A few days, many tests, and a trip to the Mayo Clinic confirmed the diagnosis of Hashimoto's Encephalopathy.
At that time, I was told that there were less than a dozen confirmed cases in the United States. There were not any cases followed for more than two years, so we did not know what to expect. I was told that the illness would end with a relapse resulting in a massive stroke, coma, or death.
What has changed in the last four years? There have been many advances in the knowledge about this disease. I am in a Facebook Support group with patients from all over the world. Doctors still look at me like I'm a unicorn until they do more research and run tests, but I have quit taking it personally. Steroids are the common treatment for auto-immune diseases. However, I now know all steroids are not created equally! Barry Bonds holds numerous records, while I developed steroid induced diabetes, bone bleaching, insomnia, gained 5 dress sizes, developed something honestly referred to as a Buffalo Hump, and went completely insane! With the help of immune suppressants, I may have lost bone marrow function...but I shed the steroids, insulin, and weight. I still don't sleep and I acknowledge that I am a small stack of crazy, but not insane! One thing I know for certain is that I have an amazing team of doctors, the best friends and family supporting me, and I am so very blessed. The best news is that this time four years ago, I was packing for Rochester, Minnesota. This week, I will be packing my swimsuit and sandals for a trip to the Caribbean!
Tomorrow I will meet with my endocrinologist to see if we are able to make a big change...so I will keep you posted if we are successful! I will meet with my immunologist and neurologist next month. There may be additional changes made then.
