I’ve been slow to update while things with my health have been changing rapidly. So here’s a big update.
tl;dr: CFS symptoms have been worsening, there have been other unpleasantnesses, but they have no serious long-term consequences. There are also new diagnostics going.
The good news about things I hadn’t talked about: The vertigo is receding and the chest pains are almost certainly reflux, not new heart problems. Not that the return of reflux is itself good news, but could be worse.
The bigger good news is that there are new diagnostic avenues. I’ve got an aggressive new neurologist who wants to be sure whether there’s anything underlying the Bastard that might result in treatment (novel idea!) or even different management.
More good news is that I’m calm about all of this. There have been ups and downs on that, but I’m taking them REALLY well, if I do say so.
And I’ve got a spectacular healthcare team here.
About two months ago, I hit a major relapse in CFS symptoms. It’s been as bad as it ever was, even at the worst of the diagnostic year. That’s been in a downward feedback loop with cardiovascular fitness, as I’m even more sedentary. And gaining weight again, which contributes to the vicious cycle. There was a two-week depressive swing in December, and those are quite rare these days and don’t usually last so long.
Two weeks ago, I went to the ER with chest pains.
NB Never have a medical emergency when flu is epidemic.
We were there for about 30 hours without ever getting admitted — finally got a bed in the observation unit at 2am, having been in the ER since 9:30 the previous morning. Long story short, it appears to be a resurgence of GERD (acid reflux). I saw my cardiologist (who seems to think I’m really interesting) yesterday for the ER followup, and there’s nothing we didn’t already know about with my heart. He also said I can start building up again on cardio, which I’d been reluctant to do before that appointment.
Now, a month ago, I’d seen the new neurologist. The original point was to follow up on the Mayo’s suggestion that there might be an underlying mitochondrial disorder. The test for that is a muscle biopsy, which they couldn’t do while I was on anti-platelet meds after the stent. There was no rush, as it’s not treatable either, but the management in terms of things like exercise might be different. The neurologist thinks mito is possible, but has a preferred hypothesis of a combination of narcolepsy (or similar sleeping disorder) and small fiber (autonomic) neuropathy.
So, since then, I’ve had yet another EMG and nerve conduction study, which failed, again, to find any motor or sensory neuropathies. He also took two samples for a skin biopsy, which are currently at an out-of-state lab being tested for the small-fiber neuropathy. I have a sleep study scheduled tonight and a multiple sleep latency study tomorrow — basically, I’ll be there 9pm to 4pm. Friday, I see the neurosurgeon to set up the muscle biopsy. It’s done at a hospital under twilight drugs, and also goes to an out-of-state lab.
In mid-February I meet with the intervention cardiologist to discuss repairing the congenital problems in my coronary and pulmonary arteries. There’s no new urgency to this, but Jalan’s vacation schedule is such that this June is the ideal time for me to have recovery. They might be able to do it via catheter, which is a trivial recovery. I’ve been down that road more than once. If not, they go between ribs, which is not trivial. But the cardiologist told me this repair does not require cracking the chest, which is great news.
Oh, and randomly, I’ve had vertigo since Thursday morning. Urgent care doc said there was an inner-ear irritation, but it appears to be nothing persistent. I just haven’t driven, and showered when Jalan’s been home. It seems to be mostly over.
After all that, there’s room for getting back on an upward trajectory, if it just means I climb the stairs for cardio on the cold, gray days while all the tests are going. This has been an unusually dismal Winter for where we are, but we’ve got a broad-spectrum light set up in our room, which is helping a great deal.