At 27 years old, my life has been flipped upside down by a new, albeit correct diagnosis: PANS. It stands for Pediatric Acute Onset Neuropsychiatric Syndrome.
My psychiatrist figured out I had PANS after a long bout with mono caused me to have extreme psychiatric symptoms. And strangely, when I took anti-inflammatories such as Advil it apparently reduced the inflammation in my brain and alleviated my symptoms. I could function in every day life and my psychiatric symptoms would just wash away. Many visits with immunologists, psychiatrists, a PANS specialist, my general practitioner, and millions of blood tests later; I finally had an answer for what had been ailing me.
There is no one to blame for this late diagnosis as the connection between brain inflammation and psychiatric symptoms were just in the beginning stages when I first contracted PANS. There aren’t enough doctors, psychiatrists, and therapists who are well versed in this disorder or who have even heard of such a syndrome.
It’s one thing for me to be diagnosed with something new, but I’ve been undiagnosed for an entire 15 years. And I’ve suffered heartbreak because of it.
15 years of getting better to only get worse
15 years of waning and waxing of depression
15 years of therapists saying “I don’t know what more to do for you.”
15 years of psychiatrists saying “You have treatment resistant depression” An incorrect diagnosis
15 years of people saying “You work so hard on your treatment, I don’t understand why you just can’t seem to get better.”
15 years of feeling like a failure and not understanding whether or not I was being a “good and compliant patient”. I couldn’t figure out why if I was working all the steps I was still suffering so much?
I had so many messy days and nights sobbing. But I never knew why I was even so upset. I was just taken over by my emotion. I did start to take notice that I was much more sensitive when I was physically ill. When I would think back on my worst “episodes” there seemed to be a theme. A connection. Memories, like the stars at night, become connected like the constellations.
Every time I got sick, whether from a minor cold or a more serious illness like mono, my brain was on fire. Over and over it is engulfed in flames which leads to misfiring of neurons. Like any other disorder, symptoms range person by person. For me, PANS looks like this:
Get sick (I also have a compromised immune system so this happens a lot!)
Brain becomes inflamed
A flare begins
Tics start followed by increased OCD symptoms, depression, anger, loss of hope, and an inability to think clearly and make rational decisions.
Symptoms wax and wane and happen all over again with the next illness that comes my way
Fortunately, I am finally on a path to recovery. I have started adjusting my diet to eating only low inflammation foods, taking different supplements, and daily antibiotics to keep me from getting ill. I am hoping my insurance complies and helps me pay for the treatment I so desperately need. If they do, I will soon start IVIG (Intravenous immunoglobulin). IVIG will take the healthy plasma and antibodies from blood donors and pump it into my body in hopes of crowding out the faulty antibodies, thereby boosting my immune system. I am going to keep working the steps now that I know more clearly where it is I need to be going.
This madness has gone on way too long. I am looking for the courage to start over and heal. Or better yet, just take my new found knowledge and live a better life; a life worth living.
“For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the courage to start all over again.”
You can visit Alyse’s blog online where she bravely speaks out about living life with mental illness at www.sheepinajeep.wordpress.com