I first started this blog a few years ago before heading to the Mayo Clinic. It was a way to keep my family and friends up to date on the news we received. I had only been diagnosed with Hashimoto's Encephalopathy for two months, but already was struggling with treatment options. At that time, prednisone was the only option we knew about. It is the "go-to" drug for many auto-immune disorders. In fact, HE is also referred to as Steroid Responsive Encephalopathy or Encephalitis. However, many of you know that there can be complications from the prolonged, high level dosing and I had them all. My main point is that when I started this blog, I had been told that there were only about a dozen cases of HE diagnosed, studied, and accepted by the medical community in the United States...ever. There were about 100 cases world wide due to the higher diagnosis and acceptance rate in the UK. There were not any support groups to turn to when I was having a bad day or people walking around wearing t-shirts or walking races to show support and raise funds for research. So I continued this blog when I got home. Over the last few years, I have been emailed by people who have lost loved ones to HE, were recently diagnosed, and sadly, many parents with children who have been diagnosed. The number of cases has grown because more doctors are learning and realizing that this disease is not just something they heard about in medical school. The support that I have received helps me continue to fight, and I thank you for being patient while I whine. Keep emailing me with your questions!
I am going to be completely honest with you...the latest news from my doctors ticked me off and I had a mini meltdown...until I realized that it wasn't doing any good and I was getting funny looks. Over the last month, I was told that the heart issues that I am having and have had for a while are being caused by autonomic neuropathy. The part of my brain that controls the involuntary aspects of life, like heart rate and blood pressure, was damaged or being attacked, therefore...my heart changes beats (kinda like when your radio picks up another station and interrupts your favorite song with something obnoxious!) My blood pressure will also randomly drop causing dizzy spells and fainting. I am on meds to raise my base line blood pressure so I don't have that problem. There is still a debate going on as to whether or not there is anything to do to address the heart arrhythmias because there is still the chance that my heart could go into a block and stop beating. Good times! But here is where the party got fun...
I went to my immunologist who ran some tests. They mostly look like a field sobriety test. Walk heal to toe in a straight line, touch this moving object with one finger...you know...complicated stuff. Not only did I fail, I failed all of them on both sides of the body. Failing means that I almost fell on my face and nearly poked the doctors eye out with my finger. So...we increased the immunosuppressive therapy to address this slight progression. Then I received a call the next day that my blood work showed elevated liver enzymes. This is common with immunosuppressive therapy, but usually requires stopping the treatment. That would not be good. The other likely possibility is that this is because of my immune system attacking my liver. The treatment is immunosuppressive therapy, so if this is occurring while on the highest level of immunosuppressive drugs that I can take...not good either. This is why I had a melt down. The strange thing is...my first instinct was to go get a beer! For those wondering, I would have to be a raging alcoholic for alcohol to play a part...but it is still a good idea to not binge:) I'll keep you posted with what I learn.
