How a 71-year-old man got diagnosed with Autoimmune Encephalitis (AE)

Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.

While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.

After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.

Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.

The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.

Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!

Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.

The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.

To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.

My favorite Autoimmune Disease YouTubers

Zach uses his platform on YouTube to share his story about ankylosing spondylitis

Zach from The Try Guys

Zach is best known for his work as a videographer for media giant BuzzFeed. During his time at Buzzfeed, Zach created a video about his struggle with an autoimmune disease called ankylosing spondylitis which received over 5 million views. In addition to having difficulty getting a diagnosis for his condition, Zach continued to struggle due to incessant back pain even after being diagnosed. He stresses the importance of being proactive with your treatment plan, no matter the severity of your symptoms. Check out his video below!

Zach’s video: I have an Autoimmune Disease

Live | Hope | Lupus

Samantha has been creating advocacy videos on chronic illness for the past 10 years. She created the YouTube channel Live Hope Lupus to create a space where those with chronic illnesses could get information and support. Samantha herself lives with the autoimmune conditions lupus, Sjogren’s Syndrome and autoimmune hemolytic anemia, as well as other related conditions, such as TMJ, costochondritis and Raynaud’s Phenomenon. She encourages others to subscribe to her channel to follow along with her journey. Check out her video below!

Samantha’s video: Lupus 101

Adamimmune

Adam started his YouTube channel two years ago after being inspired to share his story of healing. He has an autoimmune condition called Hidradenitis Suppurativa (HS), which affects hair follicles in the skin. After reaching stage 3 of the disease and experiencing significant pain, Adam implemented the Autoimmune Protocol (AIP) diet and found that his HS symptoms went into remission after three months. He is a big advocate for lifestyle changes in the treatment of autoimmune disease and shares his AIP recipes and grocery hauls on his channel. Check out his video below!

Adam’s video: Hidradenitis Suppurativa: Life Before Remission (My HS Story)

Surviving as Mom

Meredith, who goes by Meri, vlogs about her experience with an autoimmune disease called Sjogren’s Syndrome, which she says makes each day a little more challenging. She is an active stay at home mom with four sons, one of whom has various special needs. Meri’s channel contains many videos about her life as a stay at home mother, in addition to a Sjogren’s Syndrome video series. Check out her video below!

Meri’s video: Day in the Life with Sjogren’s Syndrome

Kalie Mae

Kalie recently started her YouTube channel in the hopes of being able to connect with other chronic illness sufferers. She discusses various autoimmune diseases and related conditions on her channel, including Fibromyalgia, Chronic Fatigue Syndrome, Sjogren’s Syndrome, Ehler’s Danlos Syndrome, Chron’s Disease and more. She is very candid in talking about chronic illness, including discussing the impact of her conditions on her mental health, career and relationships. Check out her video below!

Kalie’s video: Anxiety and Depression Chronic Illness Awareness

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April is Sjögren’s Awareness Month

Raise Awareness About Sjögren’s Syndrome by Sharing Your Story

April is Sjögren’s Syndrome awareness month! To raise awareness about this autoimmune disease, the Sjögren’s Syndrome Foundation (SSF) will be posting a daily story about someone affected by the disease on their social media platforms with the hashtag #ThisisSjogren’s. To participate in the campaign, fill out and submit the questionnaire at the following link along with a photo: https://info.sjogrens.org/conquering-sjogrens.

Here’s my questionnaire:

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Name: Isabel

Current age: 26

Age when diagnosed: 20

City/State: San Diego, California

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): Marketing Coordinator

What are your top three most difficult symptoms to live with: Eye/mouth dryness, joint pain, fatigue

What is your most difficult symptom that people don’t understand: Brain fog – it’s an invisible symptom, and it’s hard to explain

What do you wish people knew about your Sjögren’s: 

That the condition involves the whole body, and it’s more than just eye and mouth dryness (and even those can be destructive symptoms).

What’s your best Sjögren’s tip:
Find a positive outlet in which you can discuss your disease – whether that’s a support group, talking with a loved one or keeping a journal. I write about Sjögren’s on my blog, autoimmunewarrior.org, and use it to connect with others who have the disease.