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. 

Always learning...

It has been quite a while since I have been on here to update.  Since I last posted, I joined a support group for Hashimoto's Encephalopathy on facebook.  There were only about 30 of us last time I checked and we are spread across the globe, but it is nice to know there are others out there. 

I learned about other forms of treatments for this disease years ago that the medical community in America had not accepted.  But I have communicated with several in the UK who have actually tried these treatments and some have had success. This may come in handy in a few months.

At the end of February, I was undergoing Neurological Function testing.  The testing targeted a part of my brain that seems to be damaged.  I began to convulse, struggle with speech, and my thought process seemed to almost stop.  My husband helped me to the car where I took additional anti-convulsants and nerve inhibitors.  Within an hour, the convulsions and tremors had stopped.  High dose B-2 and anti-inflammatory meds helped with the migraine.  The next day, I felt like I had a hangover that coffee and aspirin wouldn't cure and weakness on my left side.  I had another episode that was much milder a couple of weeks ago.

While talking about this with my Neurologist yesterday, I just mentioned how my hands curl up and become very weak when the spasms, tremors, and convulsions start.  A light bulb went off with the doctor and he explained that it is CO2 deprivation.  Similar to when someone hyperventilates, through the spasms and convulsions, my breathing patterns are disrupted.  The Carbon Dioxide levels in my blood drop, along with calcium levels.  Simply breathing into a paper bag could reverse this effect.  In the 4 years I have been diagnosed, this is the first time anyone has explained this. 

My doctor also explained to me that he is no longer comfortable with the risk of lymphoma that my anti-rejection meds bring, therefore he wants to try and taper off of them in six months if I remain stable.  I tried this a year and a half ago and had a significant relapse.  That might be a good time to try IVIG (Intravenous immunoglobulin (IVIG) is a blood product administered intravenously) or plasma transfusions.  These had been dismissed by my medical staff because there had not been a large amount of successful case studies done in America, as well as the fact that they are very expensive and most insurance companies will not cover.  These are things to think about over the next six months.