Hashimoto's Encephalopathy/ Autoimmune Encephalopathy

Autoimmune Encephalopathy/ Hashimoto's Encephalopathy the specialists are now debating the label once more. It seems to be so confusing to so many Even us who are studying the disease, it is so hard to explain it to someone else.

When I was dx I was told it was not a thyroid disease, but it was my  antibodies attacking the neurons in my brain that was causing all the issues.

The path keeps changing. But the good thing is we have more specialists interested in this rare syndrome/disease. This is very hopeful, yet we need so much more. The poor people who are suffering so bad with this rotten disease makes the hope for answers not quick enough.

I believe we will find out in the future that HE is under the umbrella of Autoimmune encephalopathy for which they will have to study the antibodies to find the cause and treatment of He.

Our new edition of Understanding Hashimoto's Encephalopathy is really coming along. I am so excited as all of us are who are working on this edition. With AE specialists being interviewed for the book, we are so hopeful to provide even more information then we did with the first book. We still have at its center/ the core of the book, Patients own stories. This is the book, reading these stories. We have so many compelling  stories in this book about personal endurance  and the heartfelt things that are involved with getting a dx.

The whole problem is that doctors do not know how to dx someone with HE. They are afraid to dx them I believe. It being rare makes it even more unusual to have someone say, that patient has HE. Then comes the treatment. This seems also to be a problem for people who's doctors are not familiar with the protocol of treatment once dx.

Here is to hoping the new book with help spread light on this problem for doctors and the patients.

Now as far as I am concern, the Ivig helps. Do I like it, no I hate it, not the sitting  there being hooked up, that is not it, it is the after affects of the treatment. The being out of commission for a week out of every month. I try to tell myself it is giving me three good weeks to give up one is not that bad, but when you have so much to do, and there is no quarantine that the treatment is going to work every month, so is it worth it? Not sure, now they are talking about putting in a port because it is getting  harder to stick me and start an IV for the infusion. I am not afraid of this, but I just hate the way it looks, am I vane, NO not at almost 62 years old, but it is just one more thing that would remind me every time I change my clothes, take a shower, look into the mirror  that I am a person who is ill. And who wants to be reminded of that? lol Not me I like to forget about it.

The book is one reason I have not been here for a few months, it is all consuming right now. Also it is so hard to complete a huge task like this when everyone working on our project has HE. We take our turns having flares, and sitting back for a while. We have to remind ourselves it is ok. When it is done, it is done. The first book was behind one year for the same reason. But hopefully fall of this year 2015 it will be published. I have to say I am so proud of all the hard work everyone has done to make this an educational one of a kind book on HE.