Autoimmune Disease and IVIG

Susannah Cahalan, a journalist for the New York Post, was afflicted with a very rare autoimmune disease called anti-NMDA-receptor autoimmune encephalitis. Where my type of autoimmune disease affects the nerve roots and autonomic nerves, this type of autoimmune disease affects the brain. Susannah ended up writing a novel documenting her experience called “Brain on Fire, My Month of Madness”. She writes on a few statistics that I thought were shocking:

“Although anti-NMDA-receptor autoimmune encephalitis is rare, it is one of the more than one hundred different kinds of autoimmune diseases that afflict an estimated 50 million people in the United States, a staggering figure that has more than tripled in the past three decades. An alarming majority of autoimmune diseases–around 75%– occur in women, affecting us more than all types of cancer combined. Autoimmune diseases are most likely the number one cause of disability in women of all ages. There are multiple theories about why women are so disproportionally affected, ranging from genetic, to environmental, to hormonal (most women are of childbearing age when they are diagnosed), to the fact that women’s immune systems are more complicated (they need to identify and safeguard fetuses, which are half-foreign entities, during pregnancy), and with everything more complex, malfunctions are all the more severe. For now, it’s just one more riddle in a series of question marks.”

I love this book. I feel a kindred spirit with Ms. Cahalan. Although we suffer from different types of autoimmune diseases, it is shocking to me how similar the experiences are. I feel like I could have written this novel. She so eloquently describes the pains, the frustrations, the sufferings, and the healings that I have desperately attempted to put in to words. In one chapter, she documents the frustration with gaining weight due to steroids and other medications necessary to keep her disease at bay:

“I know now that I focused on my body because I didn’t want to face the cognitive issues, which were much more complex and upsetting than mere numbers on a scale. When I worried about being fat forever, marred in the eyes of those closest to me, I was actually worried about who I was going to be: Will I be as slow, dour, unfunny, and stupid as I now felt for the rest of my life? Will I ever again regain that spark that defines who I am?”

Being chronically ill changes who you are. I have had to adjust to a life a little less glamorous than the one I once led. I’ve had to cope with laying in bed most of the day–everyday. I’ve had to come to terms with the fact that I may not ever live my life at 100% as I once did. I may not be able to return to nursing–the occupation that I knew I wanted to pursue since middle school. I may not be able to play the sports that once shaped who I was.

But through this experience, I’ve learned things that I may not have otherwise known. I’ve learned perseverance–how to press on when it seems the world (or at least the medical world) is against you. I’ve learned who is close to me and who will stick by my side even through the most boring, endless of circumstances. I’ve learned to knit. Learned to write–and hope to one day document my experience as Susannah Cahalan did so beautifully.

My doctors finally agreed to trial IVIG. It could start as soon as this week. Assuming my insurance approves it, I will be getting six infusions of 1 gram each of IVIG over three weeks–two infusions a week. This could end up costing as much as 120,000 dollars. Fingers crossed, I won’t run into any trouble with the insurance company who has proven to be anything but supportive throughout my illness.

Pray for me as these treatments will likely cause a host of side effects–aseptic meningitis (a nasty headache that they pre-treat with Demerol), and flulike symptoms, body aches, fever, general malaise. These shouldn’t be too hard to endure as I have dealt with similar things for a year and a half now. But there are worse side effects that are possible including blood clots, stroke, and anaphylaxis due to my IgA deficiency. (I need to remind the infusion nurse to bring an epi- pen.) I will keep you all posted on how the treatments progress. After a year of wanting the treatment, I’m finally getting it. Let’s hope it works.

7 Comments on “Autoimmune Disease and IVIG

  1. Sarah

    I do hope the IVIG brings you the health you desire — and that we all wish for you. I say we look on the fact that it comes in spring — a season of renewal and a time when so many new lives get their start — as a good omen for the future!


  2. I love your faith, your perseverance,and the way you smile when you see Charlie. Charlie will be by your side, always, but especially if you continue to give him spaghetti sauce.

  3. I am right there with you….just finished the first 6 months and yes I notice a small difference. I love my nurses, they make me feel normal. I will try to keep up with you, my journey is similar!!

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