Upon reaching the Advil-riddled shores of my mid-60s, I am forced to embrace an idea I’ve been skeptical of all my life: love and faith and belief really can save the day, and in specific, concrete, measurable ways.
Let’s begin at the beginning: I’m numb, over large portions of my body. Head to toe. Right finger to ring finger. This is not fiction. This is not a metaphor. It’s an actual thing, actually happening to me. Despite the often light tone of my writing in this account, it can be a seriously frightening condition.
I’m not sure the doctors believe me.
I’m not fully numb. The numbness varies. My head, for instance, is more numb than my chest. My face is more numb than the back of my head. I suspect this has to do with the distribution of nerve endings, rather than the condition picking and choosing which patches of my body to settle into.
The numbness is not total. It’s like someone dialed back my skin’s ability to judge touch by about forty to sixty percent. It’s hard to describe accurately. It sits on the boundary between incredibly scary and kind of hard to believe.
Other aspects of my condition are less concerning because they are more easily explained away. My feet both slap on the ground like raw steaks when I walk, because the balls of my feet and toes are pretty much numbed out. This feeling extends up my ankle and calf.
Similarly, my arms have developed a tingling numbness, almost like a low electrical charge, crawling across the surface of my skin. My fingertips regularly tingle as well, like I’ve been sleeping on my arm.
As I said, these aspects of my condition are not as concerning. I have been told the reasons for them, and I understand the reason.
It’s the numb skull that’s got me anxious. If I lose feeling in my feet, I might need to rely on a cane, or a walker. But if I lose feeling in my head—home to my eyes, my ears, my mouth, my nose, my brain—I may might lose my ability to sense the whole wide world around me.
#
What do the doctors say?
They say a few things, some of them contradictory. The part everyone agrees upon, including me, is that I have neuropathy. Neuropathy is a general term for nerve damage, usually in the arms and legs. Old age appears to be the cause. I’m a little young to get neuropathy, and it came on a little faster than normal, but overall the diagnosis makes sense.
The full diagnosis is that my symptoms are consistent with “sensorimotor length-dependent large fiber polyneuropathy.”
For awhile, neuropathy was the entire diagnosis. When I asked about my head numbness, the primary neurologist, who interprets the test results, literally shrugged her shoulders and said, “Sure, it could be. We’ll know more after more tests.”
She’s in the it’s-only-neuropathy camp.
The neurologist ordered nerve conduction studies, which would help her further diagnose me. She had a confident and well-spoken manner. She told me she did not expect the studies to change the diagnosis in any major way.
Weeks later, I returned to the clinic for the nerve conduction studies. The secondary neurologist (he merely ran the tests, but he had “neurologist” on his nametag, and felt qualified to answer questions, so let’s assume he was a real neurologist) ran the nerve conduction studies. The test involved poking me with needles and running low level electrical pulses through my arms and legs, causing my muscles to flinch, and measuring my reaction times. It was less annoying than it sounds.
As he conducted the study, we talked about various aspects of my condition. We talked about my feet and legs when he tested those areas. We talked about my arms and legs when he ran those tests.
I brought up my head numbness. The tests he’d run didn’t really address that. So, I asked him, “Is a numb head consistent with a diagnosis of neuropathy?”
He said, quite simply, “No. That’s not neuropathy.”
Hmm. A blanket statement, no qualification.
I asked, “Well, after these nerve conduction studies, if we still don’t have an answer, can we pursue what might be wrong with me head?”
“These tests aren’t for measuring your head numbness. They’re for neuropathy in your arms and legs.”
“I know that. But it’s a neurological problem, right? Head numbness? It’s something you guys can look into?”
He paused, as if only now realizing that my head numbness was technically within their purview. “Well, yeah,” he said finally. “It’s not neuropathy, but it is a neurological issue.”
“Could it be caused by damage in my back, or in my neck?”
“No.” He hesitated before saying the next part, and lowered his eyes. “That sounds like a brain thing.”
As he wasn’t my primary neurologist, we didn’t pursue the subject further. He wasn’t the doctor that was interpreting the results.
So now, instead of one diagnosis, I seemed to have two. The polyneuropathy explained the numbness in my arms and legs. But there seemed to be another theory in play: the “brain thing,” as yet undiscovered, that would explain my head numbness.
#
The amount of time between my initial diagnosis (October, 2023, memorable because we saw an annular solar eclipse around the same time) and that final neurologist’s appointment (March 2024, memorable because of a second eclipse, occurring in early April 2024) was about six months.
A man can get pretty anxious in the space of six months.
That all-but-muttered, “That sounds like a brain thing” stayed in my head like an old song turned earworm. How was I expected to hear that sentence uttered to me by a doctor and not think about it in the intervening months?
The initial assessment of neuropathy genuinely comforted me at first. One diagnosis explained all my symptoms. Nothing more to be discovered. Everything was understood: no mysteries were involved. The comfort of that notion faded over the next six months, battling daily with my anxiety.
#
I brought my wife with me to my final appointment with the primary neurologist. In addition to wanting to hear her interpretation of the nerve conduction studies, I came primed with plenty of questions. I brough my wife with me to help me remember my questions, and ask many of her own.
The primary neurologist, unsurprisingly, was still sticking to that initial diagnosis of neuropathy. She said neuropathy is an odd beast, and often doesn’t stick to established patterns. She was calling it “idiopathic neuropathy,” meaning it presented in an atypical manner.
I’ll say.
I asked my questions, one after the other, like pulling arrows from a quiver. One by one, she answered them. She didn’t answer perfunctorily, she answered my questions in detail, as well as all the follow-up questions from both my wife and me. Essentially, her diagnosis was this: Neuropathy was responsible for the weakness and numbness in my legs. Some cervical damage in my neck was responsible for the weakness and numbness in my arms.
She couldn’t fully explain the head numbness, or whole-body numbness, but she thought it might be caused by the bundle of nerves in my neck.
In that same confident, well-spoken manner, she told me, “Damage in the bundle of nerves in your neck is causing the numbness in your hands and arms and chest. Some mild compression is occurring in your neck, pinching those nerves. That’s called radiculopathy.”
Cool word.
The Big Question came next: “And that is causing my head numbness?”
She said, “Well, the nerves that would cause head numbness are above that, so, no. But, there is some intermingling between the bundle of nerves leading to my arms from my neck, and the nerves leading to your head and brain. So nerve damage in one might affect the other.”
That last explanation was accompanied by her gesturing vaguely at the sides of her neck, in approximation of the mysterious tangle of nerves. Her gestures were as unconvincingly imprecise as the explanation they accompanied.
I asked every question I had written down to ask, and my wife asked every question that occurred to her. The doctor answered every question at length. She spent forty minutes with us, which I’m sure spilled into her next appointments, without ever appearing rushed or impatient.
“It’s not a brain thing,” she assured me.
I left the neurologist’s office feeling good. That is the benefit of a concise, easy-to-understand explanation. The problem is, it never lasts.
Peace.
To be continued…
Dealing with medical people can be deeply frustrating. It takes a long time to find one you can work well with.