Autoimmune encephalopathy anyone?

Dear Lioness: The gyn doctor was no better. He had some tests done and had no way to work with this problem. I asked who else could help. He said nothing. Dead end living here and at age 82 difficult to move. And then again where would it be better? I will not go to an assisted living. I have been there and see it to be "They help you to die faster and not in a nice way." and I will not ever be ready for this. SHAME on these so called doctors. (Still holding on here in Ocala Florida) But for how much longer I don't know. I will have a good day today with a great meal, music and television with Lilli cat and Margarite dog. Force that smile. (Again, I ask these so called doctors: "Are you proud of yourselves"? This is not addressed to the many other great doctors whom we all appreciate.).

@peach414144 I'm so sorry to hear about your situation So many Dr,s don't know what to do for us as we age they should understand that our bodies change We have to do our best for our bodies now .Mine is fibro and back All I do now is keeping in God,s word and looking up ,get pleasure in what you can .God bless you Peach

I also had a difficult time getting diagnosed @tanap1 . I’m glad you’re seeing an neurologist immunologist. They knew right away what was going on with me. Take good articles with you and advocate for yourself! Go to a university medical center, if you can. Please let me know how things turn out for you

Yes Lioness you are correct. But I now know that this particular doctor has done this to others. How did she get her degrees? To me she sounds like a mental case or just a very hurtful person and enjoys it immensly. There is a spychiatric label for a person such as this. But then again I am still in Ocala. (Pardon my spelling as this is an I don't care that much today. ) I do like and care for Ocala but is it true that many of the rejects come here? My clue to them is: Do not hurt your patients, just send them off with a smile and prescriptions. Ocala is a beautiful place to live and I do enjoy Ocala.

@peach414144 Beautiful Ocala right where is it located anyhow ?Is it near the ocean? I've vacationed in FLA but can't remember where it's at

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.

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 )

YES I AGREE WITH EVERYTHING. I HAD A EXCELLENT GP SHE GAVE UP TO STUDY ANOTHER I MISS HER,STRUGGLING TO FIND ANOTHER YOU CAN TALK TO. NUMBER 3 COMING UP

@tanap1 I’m wondering if the doctors you see at the medical center might know of some good primary care doctors. Or the hospital in your area might have a list of names, also. Have you tried that?

Hello! I was diagnosed with Autoimmune Limbic Encephalitis in Dec 2017. I started with faciobrachial dystonic seizures - my left arm and left face twitched. In 2 days it progressed to other types of seizures because the antibodies were attacking my brain. If you use facebook, please join the International Autoimmune Encephalitis Society page as the people are very helpful. If you don’t you can still get lots of info on their website with the same name. Different types of encephalitis affects different parts of the brain. Also keep in mind that there’s also Hashimotos encephalitits And I’m not sure if that’s the same as what you’ve been diagnosed with.