Hashimoto's Encephalopathy and Me

Yup that is right and me. It is a part of me, it does not own me. I am still the person I use to be, just a little slower. My brain does not always function the first time around when someone is trying to talk to me, or when I am typing this. But at least I have one, right? lol. But there are days I feel like the Scare crow on Wizard of OZ if I only had a brain,. (do a little dance) but I would problaly fall if I tried to do the dance, oh well. HE. Is hell. Sunday I drove sixty miles more than I have driven in three years. But felt like I was having a good day not too much pain, brain felt ok. So away I went with my hubby who would have taken over if I had a problem. But when I got home my brain started to play tricks on me. My hearing for which is not the best anyway, was going in and out. Like someone had a volume control in my brain, turning sound up and down. I must have driven my husband nuts with the volume on the changer for the tv but it was bad. Then the headaches started, still have them today and it is Tuesday and that was Sunday. Feeling blurry eyed, can not see good. So maybe the driving so far was not a good idea? Who knows right?

So tomorrow is the rheumatologists appointment, then thurs is the new neurologist appointment. So excited (NOT). I have to give the new neurologist a chance as I know she will be good and I wanted to stay in the same clinic as the old neurologist so I would not have to endure all the testing again. (For what reason) but so many doctors like to do their own tests. Thursday we will discuss the IVIG that is suppose to be my next treatment. I want to know how much for how long, at home, hospital. Then see if insurance will pay for it. It scares me for their can be some very unpleasant side affects. But then again I want to stop the progression of the small fiber neuropathy so I can maybe become more active like I have always been. At least for a little while. They need to control my autoimmune diseases to be able to help slow up the sfn. Nothing can cure it,(like the autoimmune diseases I have) but hopefully keep it at bay for a little longer.

So I will let all know.

Please remember our book we wrote, Understanding Hashimoto's Encephalopathy available on Amazon or your larger book stores. This book is a wealth of information for anyone who is suffering from this disease or knows anyone suffering from this disease. Patients own stories of their journeys to diagnosis, and scientific articles and resources are the heart of the book.

Bless you all

Susie