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A Diagnosis for Daisy

April 24, 2019  ,,Shadazah Brown (known as Daisy)

I used to get these weird feelings of anxiety. While I was working, talking, shopping, driving (of course I’d pull over) but then it started happening too often.

I started having mood changes so badly that I would lash out at my friends and family. I cried a lot. Then my car broke down. A week later I woke up late for work one day, my head was pounding, and I couldn’t see straight but I still got ready for work. I fell off my front porch, but I said I was okay, and my mom took me to work. I went into work and my coworkers said I looked like I was mad at them for calling me into work. I went to log in a patient and the patient asked if I was okay, my face was so red. Then I slumped over.

I remember waking up in the hospital not knowing why I was there. I kept trying to get up and leave so they put me on a one to one – when they have someone supervise you 24/7.  I stayed for a couple days. They tried so many tests and medications. They told me I was epileptic. Then one time they told me I was psychotic and tried to admit me to the psych wards and give me medications. I remember crying to my mom saying, ‘I’m not crazy I just don’t feel right’.

We switched hospitals to St Charles hospital where they ran their own testing and they finally decided to do a spinal tap. This was 7 months after being in and out of hospitals, having seizure after seizure, medication after medication. Some medications made me think bad things like someone did this to me or coworkers did this to me.  I cried a lot because the medications had control over me.

The spinal tap results came back as autoimmune encephalitis GAD 65 with Stiff Man Syndrome. I was put on a medication that controlled my seizures so good! I would still get auras but not full-blown seizures.

Next was the aggressive treatments. The first plan was to try plasmapheresis where they put a Port-A-Cath into your chest going into a main artery to give new plasma it’s almost like a blood transfusion – it takes out the bad blood and puts in the new blood with new plasma. I was still having problems, so they mentioned IVIG. I had mid-lines put into my forearm and had IVIG three times – no harsh seizures it but takes much rest and water to dilute the hemoglobin, it makes your blood so thick that it can cause really bad headaches. First, I started off 5 days in the hospital for infusions and let me tell you my head felt my it was going to explode so now I’m doing infusions as an outpatient – getting 2 infusions every 2 days. This was also too harsh on me so next plan is to do it every week. You kind of have to guinea pig it out to see what’s the right amount for you. We’ll see how it goes but so far so good helping with symptoms of AE. So I’m not sure but it probably depends on what type of AE you have, I’ve heard stories where hemoglobin doesn’t work for some people.

Now I am willing to tell my story to many people through this tribe! Telling my story hopefully will help people understand that this invisible brain disease is serious – don’t ever ignore your body if you don’t feel right!

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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