As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.
Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…
In the last few weeks, I’ve realized that my OCD is about to get completely out-of-hand, and I’ve also been slipping back into depression. And this wasn’t a mild depressive episode—my depression turned me into an unrecognizable lump of a human being, exhausted by even the simplest tasks and unable to enjoy anything at all.
Yet as awful as I’ve been feeling mentally and emotionally, all my other symptoms are disappearing, so the IVIG is starting to work. Given a few more months, maybe I’ll be completely cured…
Today, I have no sign of a sleep disorder of any kind. I no longer need Nuvigil to stay awake during the day or any kind of sleep aid to fall asleep at night. This, on its own, is a miracle, considering that a year ago, my sleepiness was so constant and severe that I was misdiagnosed with Narcolepsy and told I would never get better…
I can go for hours at a time without having any tics or choreiform movements, and when I do have them, they’re hardly noticeable. It’s quite a transformation from someone who was involuntarily thrashing around violently in the ER eleven months ago. I do still occasionally have my legs lock up on me when I walk, but I haven’t fallen down in weeks—and I used to fall at least 100+ times per day…
I should also mention that my memory and concentration are coming back, and I’m no longer having that feeling of being completely “out-of-it” or “not there.” Even though I’m depressed, I have a mental clarity that I didn’t have a few months ago.
If it weren’t for my OCD and depression, I could almost just live with this disease without much complaint now. But let’s face it—OCD and depression, even if you didn’t have all the other PANS symptoms, can be far more than anyone should have to deal with.
“Have you tried CBT for your OCD?” my neurologist asked.
“I mean, I did eight months of it a couple years ago…”
“I think you need to do it again. Your brain is ready for it now.”
Strangely, I found myself almost feeling happy about the idea of going back to therapy—not because I enjoy it (I actually hate it), but because I’m ready to get rid of my OCD and social anxiety. I was considering going back to therapy before my doctor recommended it, but now that she told me I should do it, I really didn’t have any excuse not to go. I remember how hard ERP therapy was two years ago, but the freedom I gained was so worth it. I know it’s still not going to be easy this time around, but it’s time to send my OCD packing, once and for all.
But what about my depression?
We have a solution—I’m now taking Wellbutrin XL, and after a few days on it, I’ve begun to feel significantly better. I have more energy and don’t feel like I’m dragging myself through each day. I’m actually happy. I’m slowly getting back into the things I used to enjoy.
From what I understood at my appointment, my doctor said that since I no longer have as many antibodies interfering with my brain’s dopamine receptors, my body hasn’t yet re-calibrated to make the right amount of dopamine. I think she said I don’t have enough dopamine yet, so that’s why I’m depressed. Our hope is that the Wellbutrin will help re-balance my brain chemistry.
I’m certainly not glad that I need an anti-depressant and have to go back to therapy for my OCD, but I’m glad that things are going to get better. For that matter, I’m glad that so many of my other symptoms are far better than they once were. I’m relieved that, for now, I’m not doing any more IVIG or plasmapheresis.
Who knows? Maybe this really is the beginning of the end…