June 16, 2016
Dr. R: “I was hoping you’d come back. This diagnosis is rare and is often called a conversion disorder, while the patient suffers needlessly.” Or “I can definitely help you. We’ll figure this out.” Or “I knew you were going to have a tough time. I’m so glad you called. Treatment starts today.”
This is just a sample of the fantasies going on in my head right now. I finally got the break-up I needed from Dr. P the neurologist. I called, again, and asked for another appointment, again, but said that I had questions this time. I got a call back saying he didn’t need to see me but I was welcome to go to another neurologist. Finally I feel free to pursue it. I called the office of the first neurologist I saw in the hospital, the one who said I had Hypokalemic Periodic Paralysis, and made an appointment. They had a cancellation and I’m going tomorrow. I’m so hopeful, more than I’ve been in a long, long time. At the time that diagnosis seemed so scary, and made without a real consultation, so we asked for a second opinion, and everything went downhill from there. The more I read about PP the more it makes sense. Nothing else has made as much sense as this. The symptoms all seem so relateable.
I’ve built this appointment up in my head so much though, like this Dr. R is going to accept me under his wing and solve everything for me with compassion and scientific interest. But I’ve been burned so many times before why am I not able to bring myself down from that high place and face the more likely reality, that he will approach me with scepticism and doubt? Is clinging on to hope serving me or working against me? I know I need to stop fantasising and sit down and figure out what I’m going to say to him, both as far as my symptoms go and how to appeal to his ego, since we left him once before.
“Thank you for seeing me again. I saw you at the General Hospital in February, 2015 and you gave me a diagnosis that, at the time, seemed very scary so we asked for a second opinion. It’s been a difficult time since then and I was hoping to explore that original diagnosis of Hypokalemic Periodic Paralysis.”
“My most debilitating symptom is weakness. I can walk, but afterwards crash really hard. When I lay down it feels like I’m strapped to the bed. I can move, but the effort involved is exhausting. I have no endurance. After walking for a time I start to feel like I’m walking through water, or my legs are made of concrete. It affects my legs the most, but has started to affect my arms as well. I have the most troubles walking up stairs. I have shortness of breath with almost all exercise and activities, depending on the day and time of day. This all contributes to my overwhelming fatigue. It’s lessened a lot in the past 2 months, but I also have chest pressure and pain.”
“I only experienced true paralysis a few times: February 2015, after childbirth, once in college, once in high school, a few times in grade school, and once as a child. My grandmother experienced it once as an adolescent. I have a video of my standard episodes, that happen multiple times a week.”
“I get blurry vision, balance problems, insomnia and sugar cravings. Extra cortisone can help with the weakness, but because of the extra activity it affords me to do I crash very hard the next day or so. Symptoms get far worse right before my period, which has been light and it becoming lighter and less predictable.”
“I really hope you can help identify what is going on so I can start living my life again.”
Writing all of this down sure makes me feel less hopeful and more realistic. No doctor is going to swoop in and be everything I want. If I can get this doctor to examine me and keep an open mind that’s the best I can hope for. I can’t go in there hoping that he’ll wave a magic wand and diagnosis and treat me on the spot. I have to stay level. I can do that. If I’ve made it this far, I can do anything.