Getting The Right Neuropathy Diagnosis

Today's post from well.blogs.nytimes.com (see link below) is a personal story of living with nerve damage by the well-known author Ann Packer. it once again highlights how frustrating getting a correct diagnosis can be. Not only that, the time taken to come to the right conclusion gives you a sense of wasted time and lost opportunities. However, this is the reality for many neuropathy patients, mainly due to the complexity and variety within the condition. In this case, a rare form of nerve damage was eventually discovered but I'm sure many people will identify with the author's journey and agree with her final statement that; "It’s time to enjoy feeling well."

Finally a Diagnosis, but Still More Questions By
 Ann Packer April 6, 2015

On a windy fall day in 1985, I reached through an open car window to pull up the lock on the door. Such an ordinary gesture, but I was unable to complete it. It was as if the tip of my forefinger and the tip of my thumb were paralyzed.

And they were. But it would take decades for me to learn why.

At the time, I was in my mid-20s and, aside from a recent bout of mononucleosis, in excellent health. This made it hard for me to take my problem seriously — even to see it as a problem. Nearly a year went by before a medical student friend urged me to see a neurologist, who determined that a nerve in my arm wasn’t working. A hand surgeon performed a complicated operation that included rerouting tendons to restore function to my forefinger and thumb, and with my arm in a cast, I was sent home to recuperate.

But two days later I woke up in excruciating pain — not in my left arm, where it would have made sense, but in my shoulder. I had another neuropathy, involving my shoulder blade, and now my neurologist was alarmed. So was I, imagining a wasting disease that would leave me in a wheelchair for life. I was sent for X-rays, an M.R.I., an EEG, but everything was normal. We chalked it up to a strange coincidence.

Years went by, and the peculiarity of what had happened to me ebbed away. I got married, moved to Oregon, had a baby. When my right elbow suddenly starting aching years later and I lost strength in my thumb, I knew enough to consult a neurologist immediately, and prednisone kept the damage to a minimum.

I had a second baby, moved again, and worked on my first novel, about a young man who breaks his neck in a diving accident. The realm of fiction was a far safer place for paralysis, for life in a wheelchair.

Then two numb patches appeared on my upper arm, and yet another doctor found something new: My blood was positive for antinuclear antibodies, a sign of autoimmune disease. It turned out my body was periodically attacking its own peripheral nervous system.

A decade went by before the next incident. I was accustomed to the vague befuddlement most doctors demonstrated in the face of my history, but this time was different. My new neurologist left the room and returned with a piece of paper on which he’d written “HNA – INA – Parsonage-Turner Syndrome.”

At long last, my “arm thing” had a name: neuralgic amyotrophy, or N.A., which means, fittingly enough, painful wasting. This rare condition, originally described by a pair of British doctors named Parsonage and Turner, exists in two forms, designated H for hereditary or I for idiopathic, meaning of unknown origin.

I got to work on Google. There was a clinician in the Netherlands who had written many articles on the disease, and it was uncanny: Her patients’ histories read like reports I could have written about my own experience. She hypothesized that people who suffered from N.A. all had a predisposition, but what caused the attacks differed. Some common triggers were infection (I’d had mono!), surgery (I’d had the operation on my arm!), emotional trauma (I’d had stress!).

For 27 years I had been living with a medical mystery, and now it was solved. But rather than feeling freed, I couldn’t stop thinking about it. On Facebook I found a support group whose members had gone through much the same things I had, with many describing situations far worse than mine. Some people could no longer lift their arms; others had been in unremitting pain for years. One or two were on ventilators. I looked at the group’s page several times a day, participating in conversations with various members, telling my story.

I reread the Dutch doctor’s articles, poring over them for … what? For years I’d thought my problem was that I didn’t know the name of my problem. Now I was discovering that this information made no difference. In fact, it made things worse: I was obsessing about my medical issues more than I had when they were a mystery. At one point in an email correspondence with the Dutch doctor, I wrote, “Is vasculitis at work in N.A.? Or is the mechanism known?” And she replied, “No, N.A. is not a vasculitis as far as we know. It might be an autoimmune perineuritis, but that’s unsure.” Who was I kidding? She might as well have been writing in Dutch for all I understood of this exchange.

My most recent episode had left my right index finger inflamed and tingling, and my right forearm so sensitive to touch that I couldn’t wear long sleeves. But gradually the tingling subsided, and it occurred to me that I was in a familiar phase: the return to normalcy I had experienced half a dozen times already. The only difference was that I was now living with the knowledge that I might go through a certain type of medical crisis again.

But how was I so different from other people? Take away “certain type of” and “again,” and my situation looked like a truism of middle age: I might go through a medical crisis. Well, yes.

Until that unlucky day, though, best to get on with it. No more support group unless I need it, no more email correspondence with strangers. It’s time to enjoy feeling well.

Ann Packer is the author of “The Children’s Crusade,” just published by Scribner. 

http://well.blogs.nytimes.com/2015/04/06/finally-a-diagnosis-but-still-more-questions/?_r=0