Wednesday, July 17, 2013

4 year update


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. 

1 comment:

  1. Hello I was just diagnosed this morning with Hashimoto's Encephalopathy...I thought I was losing mind these 4 months. I honestly that the neurologist was going to say I had Parkinson's. Tomorrow I see an endocrinologist and they have scheduled a MRI. I had my thyroid raditated out 10 yrs ago, so I do not understand how a dead organ can be causing this. Just trusting the Lord through this nightare.

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