If you’re an NMO patient you likely have a moment every day when you ask yourself, ‘am I having an attack?’ There are good (manageable) and bad (can’t get out of bed) days. Bad days last a couple of hours, other times it can stretch on for months.
Pain tolerance and the type of heightened symptoms varies for each patient. For me, I know it’s time to get rest when all my extremities go numb, the pins and needles are unbearable, my left eye gets fuzzy and my core feels like it’s filled with lead. It’s either all of these things or a variation of some of them.
I’m not one to complain. In fact, one of my doctors actually thinks I’m reckless in my denial when things aren’t going well. After years living with neuromyelitis optica (NMO) I’ve learnt to be patient and try to ride out the bad and painful moments. But that’s where it gets complicated.
When do I tell my team of doctors that I need help?
Recently I’ve been experiencing a couple of months of symptoms. This isn’t the first time I’ve endured a lengthy period of symptoms and unfortunately it won’t be the last. I thought it could have been the summer heat, stress from work or just bad luck. The support groups online are a great forum for autoimmune deficiency patients to get support but I’m always a little shocked how many patients suggest running to one’s doctor and asking for insisting on the most extreme treatment plan.
So, how do we differentiate between a bad day and an actual attack? When do we seek medical advice or when are we just possibly crying wolf?
Well, if it’s a major episode (loss of vision, paralysis, etc.) it’s obviously an attack. But lower grade episodes are harder to identify. With limited documentation on the best course of action for NMO patients, neurologists are making educated guesses. Unlike other diseases that have decades of case studies, patient records and drug trials, NMO is still considered a newcomer. I’ve worked with my team of doctors for about 7 years so I trust that they know my medical history to make the right call. They also trust me (for the most part) that I’ll be diligent enough to ask for help when I need it. Prednisone (aka steroids) are usually the first course of action in either a major or minor episode, the challenge always being how much to administer and for how long. Prednisone has horrible side effects for me so my doctors offer the drug only when absolutely necessary.
Ultimately, you know your body best and although I’d like to believe my body will give me a little heads up before a major attack, I’m not confident (or have historical data) that it will. At best, the course of treatment I’m on will keep things at bay and will subside the symptoms I’m feeling. And at worse, well, I’m probably around the corner from an attack and I’m just being ignorant about it.