Hashimoto's Encephalopathy (Autioimmuine Encephalopathy) SREAT (Steroid Responsive Encephalopathy Associated with Tyroiditis) HE(When will they decide on a name).

Hashtimoto's Encephalopathy (HE) is a rare autoimmune disease characterized by neurological and psychiatric symptoms, and is one of the listed "rare diseases" with the NIHs Genetic and Rare Diseases Information Center. He is an autoimmune disease in which a patient's antibodies mistakenly turn on and attack the patient's brain. The results of the attack may include severe cognitive impairment, speech disorders, seizures, memory loss, impaired balance, movement disorders, and sometimes psychosis. Patients sometimes may fall into a coma and in rare cases it can cause death. Unfortunately, HE is not well understood and patients often face an enormous struggle trying to find the correct diagnosis. But three women came together, and wrote a book the very first of it's kind. There has never been a book written on HE. If interested in this very informational book please ask your local book store or go to Amazon and ask for (Understanding Hashimoto's Encephalopathy) It will be available on Kindle with in a week. Hugs and kisses to all you suffering friends, and I hope this book sheds light on a very rare disease.

Understanding Hashimotos Encephalopathy

This is the title of the book I have been working on which is on sale as on Dec 31, 2013 on Amazon and next week it should be available on Kindle. I am so proud of all the work that we have all done on this book. There is so much information for anyone who has been dx with HE, or family members of patients with HE. There is wonderful information for the medical world as we have over 40 patient stories of how they were dx, misdiagnosed, treatments options and symptoms. Their stories as individual as the rare disease its self. As of a few weeks ago we have sold over 200 copies. So exciting. All money goes back into our non profit org that will reinvest the money into sending copies to teaching hospitals, 3 rd world countries and so on. I feel we really can make a difference. Being sick with chronic illnesses can make one feel pretty useless. Not only can you not work and add to the family income but you are not well enough to even keep your own house clean, or have the strength in your body to take a shower on some days. So to do something positive with the gifts God gave us is very powerful to me. It makes me feel like I can still contribute to society, make a difference. None of us are scholars writing this book. But we did it through all of our sicknesses, and set backs. So winter has been raw, heavy snow, and heavy legs for me. Hard walking, using a dang cane to steady myself. It does help with the body movements but now with my head movements. It hurts to use it. It hurts my pride. I just came back from a very close family friends funeral, and my legs have been very back along with my back. But I would not use that dam cane at the funeral, no instead, I stood up in the front talking to the family tipping over so that one family member had to catch me and straighten me up. So lets see what would have been more embarrassing? Me tipping over for no reason, or using a cane, gee lets see. Well that was a lesson learned tonight. I have to get back swimming, next week, two much time off. I feel it too. I need to keep; what I still have moving. Well I had to give into steroids over Christmas, I had to go on a steroid pack, to help me through. My brain, my word finding, was awful. I was dragging my right leg and foot. I had so much confusion and no concentration in anything and everything I did. Even recipes for which I never had problems in, are now a problem for me. I can read them over and over, yet take my eyes off the recipe for one min. and I forget something, this is a downer for me. I have always prided myself on my cooking and baking, not no more. My lap tops been down for over a month, been trying to use my kindle for which thank God I had it for e mail and faced book, but the auto corrects were driving me nuts along with who ever was trying to read my messages. lol. Well time to head to bed will be back soon. Good night

Small Fiber Biopsies Waiting for Results

So the waiting begins. I had a small fiber neuropathy done in two places in my left leg yesterday. I have perhieral neuropathy, and my doctor has said I have small fiber neuropathy also, but the rheumy thinks it needs to be confirmed by the biopsies to see if that is what is causing my walking and tipping and I think he is right. At least I will know for sure if it is from that or not. If not then I have to look somewhere else. Although the large fiber neuropathy can cause the walking problems also, the rheumy said with the small fiber it will come and go, such as the pain and stiffness in my legs. So we will see. The last few days it has not been to bad, but then again I have not really gone anywhere, or done too much. So how can one tell. Tomorrow it maybe back in full force again, and I will be thinking I need to buy a cane. I do know that I will have to get one soon. As the balance issues is bad. My word finding is bad right now too, calling things the wrong names, which sometimes can be funny but it gets embarrassing if anyone else is around. This is caused from my friend HE. Nothing is boring here in autoimmune land. The doctors are talking IVIG treatment if the tests show sfn. I know there has been some good results, so that makes me anxious, but the side affects scare me. Severe headaches, nausea not to mention how much each IV infusion of the IVIG is and if the insurance will cover it. Lots of ifs. But I want to walk, I want to be able to take a mile or two walk, go shopping, have fun with my kids and grand baby. So we will see what the next two weeks may bring.

I can not walk, tipping like a drunk no answers

Such a title, right? Well, my walking has been so bad again, pain, weakness, stiffness. I had an appointment with my neuro who I really respect and like as a person. She agreed with my PT that all my trouble is not coming from my back issues. There is a lot more to it. Then lately, my legs get stiff, like I can not bend them, this she thinks could be the scleroderma. They itch bad too. She said to ask my rheumy end of the month when I go about it. I have had other things that have come up such as the loss of pigmentation on my hands that I would attribute to scleroderma also. So we will see. But yesterday I was so bad when I went to the appointment that I could barely walk, when she walked with me to leave, I stopped to answer a question and tipped over into the left wall. (Like I do) So for once I showed the symptoms as they are for a doctor usually I get into the doctors office and everything is better, just like a kid. lol Well she wants me to record my blood pressure three times a week, for two weeks, once laying down, then once walking for three mins. and fax it to her. She thinks my blood pressure could be dropping. (Neuropathy causes this also) but I really do not believe this is it. If anything my blood pressure spikes, not drops. But we will see what happens. She feels this could be the arm problem also. Again I do not believe so. But when the two weeks are up, I want more tests I want to know what is going on, if I know I can handle it. She wanted to give me stronger pain meds and I said no, I am alright with that. I can handle it right now. So I walked out without bringing up the plasma exchange treatment I was going to talk to her about, but I will mention that also when I fax the info to her. IT is so weird that today now I feel better, not great, but better than yesterday, one just never knows. As normal I am tired but that is an everyday thing for me. Well enough for now, till we meet again.