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Tue, Oct 29 2:17am · Autoimmune encephalopathy anyone? in Autoimmune Diseases

@valm Thanks! I have requested to join the International Autoimmune Encephalitis Society. I currently follow the Autoimmune Encephalitis Alliance, Understanding Hashimoto's Encephalopathy, and HESA which are also on facebook. Although I haven't been medically "coded" with a diagnosis of Hashimoto's Encephalitis, I am currently being treated as if that is what I have. I have no other autoimmune markers except for very high TPO and TGab levels. I responded very well to high dose IV steroids so hopefully I am on the right track! The steroid treatments have "worn off." I hope I find good answers with the neuro-immunologist. What types of Drs do you see for your care?

Tue, Oct 29 1:53am · Autoimmune encephalopathy anyone? in Autoimmune Diseases

@american Like Becky, I also go to a university hospital. I am in the Kansas City area and go to KU Med. (Kansas University) My referring Neurologist also called the neuro-immunologist an "autoimmune neurologist"

Tue, Oct 29 1:46am · Autoimmune encephalopathy anyone? in Autoimmune Diseases

@becsbuddy That is a good plan. I am hoping to find a Dr that will believe in my diagnosis. It seems hard to find Drs out there that take some autoimmune illnesses very seriously! I was thinking the same, find a Dr that is in the same network system as my specialists.

Mon, Oct 28 1:43am · Autoimmune encephalopathy anyone? in Autoimmune Diseases

Peach, I am so sorry you had such an awful experience with your dr. I actually had my primary dr roll her eyes at me when I informed her my neurologist was referring me to the Mayo Clinic a year ago. I just about cried right there in the office. I definitely am in the market for a new primary. For now, I only use her office for routine blood work which I have about every 6 mos. Once I find someone I feel may care a bit, I will switch. Most of my medical concerns are being treated by specialists right now. Once I decide to FIRE her as my dr, she will probably be thrilled. I doubt she enjoys me as her patient as equally as I don't like her as my dr. (the eye roll kind of brought that idea home for me) Regardless, there is no excuse for poor care. We know our own bodies better than anyone, even Drs!! We deserve good medical care. Keep pushing for your own good health!! I'm going to! We owe that to ourselves. 8 )

Mon, Oct 28 12:44am · Autoimmune encephalopathy anyone? in Autoimmune Diseases

Thank you so much, Becky! I am glad you have finally received a diagnosis and hope you are getting helpful treatment. I actually am going through a university medical center. I have found the most help by going to Dr.s within the same network. At least, within the same network, each Dr has access to information from other Dr.s. They may not all agree with each other but is seems to lessen multiple repeat testing and things of that nature. In my situation, it seems the process of elimination is a huge part of finding a diagnosis. I am trying to remain hopeful the neuro immunologist will have some answers for me.

Tue, Oct 22 9:35pm · Autoimmune encephalopathy anyone? in Autoimmune Diseases

Thank you so much! I will take a look at it. The more informed the better, right? I'm just so hoping to not be dismissed by a new doctor. Unfortunately, I have been by a few.

Tue, Oct 22 5:39pm · Autoimmune encephalopathy anyone? in Autoimmune Diseases

Searching for a diagnosis!!! I am looking for others who may be having similar experiences as I am. I have been diagnosed with Hashimoto Thyroiditis for many many years now. I take levothyroxine, which seems to keep my thyroid in check. However, about 5 years ago I began having neurological symptoms; gait issues, off and on memory loss, concentration issues, tremors, seizure like episodes, stroke like symptoms, severe muscle cramping (dystonia?), word finding problems….the list goes on and on. These symptoms come and go, usually made worse by stress or being tired. All diagnostic tests I have had come back normal, eeg, emg, blood work including various antibody screenings, MRI's, cardio sonograms, EXCEPT for low but normal memory screening and very high TPO and TGab levels. I was given 1 5-day treatment of IV 1000 mg Solu-medrol which turned me into a brand new person!!! I felt great for several months but my symptoms are returning now. My current Neurologist has now referred me to a Neuro immunologist. This will be my 5th Neurologist in 5 years!! I am so nervous that I will be dismissed after I actually had something work for me. I have been dismissed by many many drs through this. All the things I have learned seem to point to Hashimoto Encephalopathy, HE, SREAT, AE….whatever you want to call it. BUT I have found many people in the medical field don't believe in this diagnosis! Any help, pointers, suggestions, or support out there? Is there anyone experiencing similar things?

Mon, Mar 11 5:37am · Thyroid? Or something else? Constant internal shakiness in Autoimmune Diseases

@blulilbaby, Oh wow!! I can relate to those symptoms and more!! I have also been diagnosed with Hashimoto's. I do have hypothroiditis. My thyroid hormones check out well with my medications, however, my TPO antibodies and TG antibodies remain crazy high! I have had numerous falls (2 broken bones) due to imbalance issues, temors in my hands and head-neck. The tremors seem to be more obvious to others the more physically tired I am. I have memory issues, possible witnessed absence seizures, loss of words, horrble spasms in my feet….ugh!! I could go on and on! I have been doing test after test for more than 5 years now! These symptoms come and go! I can tell you a bunch of things i DONT have! It IS frustrating!! I just wish i could find even i trigger to feel like i have some control over this