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.