I threw myself a pity party on Twitter last night, and I’m trying to consolidate some feelings and lessons from it. Some of the background is a rehash from the last health post, but with updates and I’ll try for not too much redundant detail.
- Mysterious symptoms onset rapidly in February, and progressed rapidly through April. They’ve been fairly steady (and disabling) since then. April set off a wave of diagnostics in many specialties.
- The first specialty to find something that might explain the problem and lead to a course of treatment was neurology. Insurance slowed things down, and the next step was a subspecialist appointment over 90 minutes away and 8 weeks later (end of June). More on this in a few.
- During the general diagnostics, a cardiologist found a bloodflow abnormality. This turned out to be a very rare congenital condition that could lead to long-term problems, but was unlikely to the source of the current symptoms.
- During the probes on the bloodflow, a cardiac cath found a major arterial blockage that needs surgery, and could be contributing to the current symptoms. Open-heart surgery to correct both will be scheduled Monday, probably for the last week of June.
- Because the surgery would make the neuromuscular subspecialist appointment impossible to keep, I was able to get on standby and had that appointment yesterday, with two topnotch specialists (the director of the neurology residency and the chief resident, both specializing in neuromuscular disease). The most likely diagnosis, in their opinion, is something called LEMS ( http://goo.gl/IrzvN ). The diagnostics to confirm that and set a course of treatment are scheduled for late August, when I’ll be able to travel again post-op.
- The debilitation from the LEMS will slow down my post-op rehab. And as a bonus, if the LEMS is confirmed, it’s more often than not a leading indicator of lung cancer.
So, in summary, the mystery symptoms led to finding a neuro problem. The other tests found the bloodflow problem that isn’t even causing the symptoms. The probes to that incidentally found an acute heart problem that hadn’t shown up in cholesterol levels, blood pressure, EKGs, or anything else. Meanwhile, the neuro problem sets off a cancer alert.
I’d be very surprised if I’m in the 60% of LEMS patients who do have lung cancer, because I have essentially zero other risk factors for it, but who the hell knows? At this point it would be just one more bit of fuckery.
On the downside, pity party last night. On the upside, without the mystery symptoms and the consequent comprehensive workup, I wouldn’t have known about either the acute risk of heart attack or the need to scan for lung cancer for the next couple of years. Also on the upside, both heart problems are eminently fixable, and lung cancer patients with LEMS have better prognoses for both the LEMS and the cancer.
I normally balk at the “everything happens for a reason” paean, but this is challenging my skepticism!