Well, my first round of IVIG is finished. Initially, I was due for 6 treatments over the course of 3 weeks. Each dose of 1 gram/kg. After getting aseptic meningitis after the first treatment, my infusions were spread out over 6 weeks.

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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:

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I remember reaching downtown just as the sun began to set. San Francisco at dusk is a beautiful, bustling place. Brakes squeaking, fluorescent lights illuminating bars and restaurants. Riding road bikes through the streets sounds fantastic, but in the dusk, reality proves dangerous. Obstacles abound: trolley tracks that attempt to catch your thin wheels, taxi drivers whose patience is thin, not to mention the steep hills that define the city. As the orange light breaks through the small crevice between the grey cement sky scrapers, I give up. I get off my bike yelling to my companions, “I don’t have health insurance!” I thought I was cutting it close when we were descending the steep hill into Sausalito after the Golden Gate bridge. One patch of sand or small rock and us novice bikers could have met our Maker. After riding the ferry back to the city and attempting to ride fast to make it home to Nob Hill by dark, I had enough.

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I promised myself I wouldn’t be Debbie Downer (wah, waaaah). I have neglected to write because I have nothing good and hopeful to say. But today, I changed my mind. I read:

 

“Maybe your [experience] was grim and horrible, but grim and horrible is okay if it is well done.” -Anne Lamott “Bird by Bird” (4).

 

My experience is real. And I will document it accordingly.

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Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)

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So I thought I would provide an update on my diagnosis/treatment journey.

About a month ago I came to the end of corticosteroid treatment that proved beneficial. I started to show signs of Cushing’s syndrome–moon face, weight gain, etc. (and no, I won’t post a picture). At this point, my cardiologist and I know that I need to begin weaning off the prednisone because the risks are now outweighing the benefits. Unfortunately, the doctor that is now in charge of my care, the researcher at EVMS, is not completely convinced that my autonomic dysfunction and multifocal radiculopathy are caused by an autoimmune process.

As his team is meeting and discussing what their plan for me is, I become sicker and sicker. About 3 weeks ago, I was at the point to where I could not get out of bed. Even making it to the bathroom was too much of a task. When I lifted my head, the room spun. I was short of breath and my heart rate was extremely unstable–reaching 160s-170s at rest. I knew I needed to be proactive and force the issue with the team.

I came asking for IVIG as my gut was telling me this is an autoimmune problem. The PA I saw was very attentive. He listened and I knew he heard the distress in my voice. I was at the end of my rope. I needed a treatment plan ASAP. Even though I tried to remain logical and clear, my emotions took over as I pleaded for the treatment. I tearfully asked him, “Matt, what would you do if you were me? What would you do if you had two physicians–your neurologist and cardiologist–who you trusted immensely, recommend this treatment of IVIG, and one physician who is the expert who wants to hold off?”

Matt took a deep breath as if he was really putting himself in my place. He hesitated as he answered, “Please don’t feel as if we are withholding treatment from you. That is the last thing we want to do. I will take your concerns to the head of the team and I will let them know your position. Call me on Friday (it was Monday) and I will let you know what they say.”

That week was agony. Not only did I feel terrible physically, but my mind was racing with what the team would come up with. Would they still not recommend the treatment? Would I have to return to the Mayo Clinic? Would I have to push the conversation and force the issue? All I want is to be a patient. I want to stop feeling like I need to drive the treatment process because all the doctors want to do the absolute least possible to get by and avoid liability. I just want to be the patient.

To my surprise, Matt called me himself on Friday morning. He informed me that they wanted to start a 6-8 week trial of Imuran–an immunosuppressant. This trial was to give us a better idea if the cause is immune related. If I begin to feel better, and objectively, my autonomic functions improve, we then will know if IVIG would be beneficial.

I couldn’t believe what I was hearing. He came up with a plan, provided a timeline, and even let me know that he had called my cardiologist and collaborated and agreed on a plan. Can you believe it?

I got a CBC drawn on Monday to make sure my WBCs were normal prior to the initiation of treatment. On Tuesday, I started the Imuran. I finally feel like I am comfortable with what is happening. I am in agreement with the plan and am hopeful this treatment will help  guide us to a diagnosis. We will see if my gut was right and my disease is immune related. Fingers crossed I will have IVIG in 6-8 weeks.

And so we wait.