Comments on: Nailing the Suspect: The Prevalence of Autoimmune Encephalitis Compared with Infectious Encephalitis

By: Kelley Schreiber

Kelley Schreiber — Mon, 07 May 2018 15:37:59 +0000

In reply to David R Chavez. Thank you for your comment, David. According to Dr. Flanagan, "In our study about half of those with autoimmune encephalitis did not have a neural antibody found. The incidence of seronegative autoimmune encephalitis was 0.4/100,000 person-years. We suspect that over time with medical advances and the discovery of new antibodies associated with encephalitis, some of these patients who were seronegative in our study may have antibodies that were not detectable previously. Retesting for antibodies can be considered in patients diagnosed many years ago with seronegative autoimmune encephalitis, as the rate of new neural antibody discovery is currently 1-2 per year.”

By: Terri Hinkle

Terri Hinkle — Sat, 05 May 2018 17:16:08 +0000

My 26 yr. Old daughter was diagnosed by the CDC in Amarillo Rd. June of 2017. He said it was highly probable she got it at Smithfield Genetics i n Pampa Tx. at her job inoculating the swine there. They terminated her and cut off all medical. She has tremors muscle weakness, slurred speech, displaying pupils, tires very easily, memory loss, slow comprehension and thought process. Her primary care physician in Pampa would no longer see her due to no insurance. I have spent my savings although as s my alot to try to get her seen. No benefits as of yet. Filed for ssi and sad in Jan. waiting for decision. She can’t hold a job because of her illness. So no unemployment. No indigent care as of yet she’s applied now 3 times. Ruth’s place said she’s too severe. Workmans comp said they won’t cover because its viral. Frustrated. Feeling no one cares and not willing to help. You never thought you would have to hand feed your once healthy daughter at 26. Just in tears. No where to turn. Overwhelmed.

By: Daisy Guruvadoo

Daisy Guruvadoo — Fri, 04 May 2018 22:42:55 +0000

My 20 yrs old just experienced anti-nmda receptor encephalitis a few months ago. She was a very bright, healthy young lady in her 3rd year premed at the university. She came home for a visit just the weekend before Thanksgiving, and started complaining about headache on the left side of her head. We rushed her to the ER, at Halifax Hospital in Daytona Beach, Fl, and after doing a few tests, we were told that she was fine and just needed some rest. After 2 days, the headache became unbearable and we took her back to the ER. But by then, she had started to blink her eyes and the ER doctor told us that she was having seizures, which she never had before, and kept her overnight for observation. The next day, the neurologist came in and told us that he was moving her to the ICU so that she can be monitored with an EEG machine for the seizures. My daughter was almost her normal self before she was admitted to the ICU, except that she was blinking her eyes more often and hallucinating every now and then. The day after being in the ICU, on Thansgiving day this past yeat, the neurologist claimed that she was having seizure activity in her brain and decided to induce her in a coma and out her on a ventilator, so that he could put her on heavy doses of anti seizure medications and antibiotics. In the meantime, all her tests were coming out negative for bacterial infections for almost 2 weeks. She was finally taken off the ventilator after 10 dys but by then she was worse than when she went to the hospital. She wasn’t responding to us, not talking, not swallowing and just confused and agitated. She wax tied to the bed and the doctors kept giving her ativan and precedex to keep her comfortable and didnt have answers for me. That’s when I realized that I was going to lose my daughter if she stayed in that hospital. She had developed pneunomia and her health was detoriating and the neurologist, ICU doctors and the infectionist doctor had no idea what diseade she had, but were just pumping her with medications that were making her health worse They never even tried to give her any type of anti-vral medicines even though they knew that it wasn’t bacterial. With the help of one of the ICU doctor, who saw my daughter for just 2 days, she was finally transferred to the Neuroscience Institute at the Orlando Florida hospital. The neurologists at Halifax were very clueless while my daughter was lying there, on a hospital bed, and fighting for her life.
At the Orlando Florida hospital, Dr. Hyeong Lee and his team took over her case and saved her life. We found out that my daughter should have been started on steroidsat Halifax hospital once the doctors knew that she didn’t have any type of bacterial infection, but they had instead compromised her health more and which I believe almost killed her. Dr.Lee started my daughter on immuno-suppressants as soon as he saw her and told us he suspected that she may have an autoimmune disease on the very first day. Within a week, he confirmed to us that she had anti-nmdar encephalitis, even though she didnt have any ovarian cyst, teretoma, or any psychiatric symptoms. Dr.Lee worked with his team, along with a team of neuro-oncologists, and they used all their medical skills, their knowledge, and did their best to save my daughter’s life. They were the most caring and compassionate doctors and we feel so blessed to have met them.
After spending about 6 weeks bedridden at the Neuroscience Institute, my daughter had started to recover from the trestments dhe was getting and was able to recognize us on Jan 3rd. She was then discharged on Jan 19th, 2018. She’s still recovering and has regained back about 75% of her memories so far. She couldn’t remember much after she started getting better. I remember vividly how heartbroken I felt when she started crying because she couldn’t remember how to tell time on Jan 15th or even do simple maths problems.
My point in sharing part of my daughter’s ordeal with anti-mda receptor encephalitis is to bring more public awareness about this disease, so that more lives can be saved with the right diagnosis. The lack of knowledge about Anti-NMDA Receptor encephalitis among people in the medical field, and mostly among doctors, can be very scary. People affected by this disease can lose their lives unnessarily if the doctors don’t diagnose and treat them accordingly on time. I hope that more and more people educate themselves and learn about this disease by reading about it, and not by the way I learned about anti nmda receptor encephalitis. The more we share about our ordeals, the more we can help others avoid the pain and suffering that we went through. I honestly and sincerely hope that no other persons and parents have to ever go through the painful and scary journey my daughter and my family went through.

By: Steve Knight

Steve Knight — Wed, 02 May 2018 02:56:17 +0000

One evening in June 2017, my wife suddenly began showing the signs mentioned in your article : disorientation, confusion, forgetting names of familiar people and objects, etc. Suspecting a stroke, we took her to Mayo’s ER on the Phoenix campus. Pain in her head was so intense that she couldn’t speak, so it was futile to ask her to describe what she was feeling. The ER staff did the best they could, although one fellow told us that he’d often seen these same symptoms in OTHER people who were going through drug withdrawal. THAT was not appropriate and definitely did not describe my wife. Things were getting worse, not better, and then Dr. Cumara O’Carroll stepped into the room. By now it was about midnight. She was not on duty but had been called to the ER to see another patient. She’d finished with that consultation and was on her way home, but she had an impression to look into our room to see what the confusion was all about. After assessing my wife’s condition, Dr. O’Carroll instructed the ER folks to administer an anti-viral drip. My wife was admitted to the hospital, and, shortly thereafter, Dr. O’Carroll left.

Long story short: Lab analysis of my wife’s spinal fluid revealed the presence of the shingles virus, and this had caused encephalitis. The early administration of the anti-viral drip, even though the encephalitis had not yet been confirmed, was the key to my wife’s quick recovery — she was discharged three days later and has made a total recovery. It’s hard to describe the gratitude we feel for Dr. O’Carroll’s insight, treatment, and counsel.

Six months before this event, I had retired from the working world but soon found myself with too much time on my hands. Last December I found my dream job: I now work at Mayo in General Services as a courier. What a privilege it is to work in this terrific environment–to be surrounded by people who, like Dr. O’Carroll, are living examples of the Mayo’s mission: putting the needs of the patient before all else.

By: David R Chavez

David R Chavez — Mon, 30 Apr 2018 13:25:10 +0000

Thanks for sharing this information. One subgroup of patients with autoimmune encephalitis you did not mention was the sero-negative group. Patients with sero-negative encephalitis can be very difficult to diagnose and this can delay their treatment or truncate it prematurely. I am speaking from experience, my then 13 y.o. son developed a non infectious encephalitis in 2013 and was partially treated during a 6.5 week drug induced coma to control his intractable seizures. He partially recovered after a 100 day PICU stay and 3 months of rehab at Spaulding Rehab Hospital. All anti-bodies panels have been negative to date. He suffered a relapse in June of 2014 and was treated with high dose Solumedrol and IVIG, with a remarkable response. What is your estimate of the incidence of sero-negative autoimmune encephalitis in the general population?

By: Modupe A.Meduteni

Modupe A.Meduteni — Mon, 30 Apr 2018 05:26:08 +0000

A good step in assisting the physicians for a better management of their patients. Kudos to Mayo Lab for being a pioneer