The Crooked Path – My PD Diagnosis Story (originally posted February 3, 2011)

As I mentioned in my first blog and in the newsletter, we’ve all got stories to tell. I’ve come to learn that the story of my diagnosis process for PD is typical, especially for young-onset PWPs. It might have been nice to know that during the seven years that it took to finally arrive at the answer, but it seems that often a diagnosis of PD makes sense only in retrospect – from where I am now I can look into my past, and armed with a knowledge of the signs and symptoms of Parkinson’s, I can say, “oh, ok, so that’s what was happening.”

My crooked journey began so gradually that I have a hard time pinpointing a specific time or event as “the beginning.” I was an avid skier and scuba diver, and as I began to get a little older I had a tendency to forget I wasn’t 18 anymore. I had the normal aches and pains of a man approaching middle age and pretending that he isn’t, and I tended to discount those pains. However, about six or seven years ago, I started to notice a pain in my left shoulder, elbow, and wrist never seemed to go away. I dismissed it as muscle strain from over-enthusiastic pole-planting on the ski slopes or carrying scuba tanks, but was a bit concerned that it didn’t improve, even with rest or over-the-counter painkillers. I was busy with work and family, though, and continued to ignore the pain – it was irritating, but not debilitating.

I began to notice other things over the next year or two. I found that my left hand and arm sometimes felt stiff for no apparent reason. While driving, I had the odd sensation of not being able to find a comfortable position for my left arm; it wasn’t exactly painful, just irritating and distracting. I also began to notice that, because of the stiffness and rigidity in my forearm, the little finger and ring finger on my left hand would sometimes just “lock up”, and I’d be unable to bend them. If I forced them, they would finally give with an audible crack and a spike of pain. They say that ”if it hurts when you do that, then don’t do that,” so once again I just tried to ignore it and attribute it to advancing age and overuse. However, I finally began to become concerned, and decided to go see my family doctor about it.

Going to the doctor is not among my favorite things to do, so perhaps six months passed before I made the appointment and went in for a checkup. In that six months, I noticed still other unusual physical issues – I began to have difficulty tying my necktie, and I noticed that my left thumb and fingers would sometimes twitch and shake, especially in the mornings or on my drive into work. I finally went to see our family doctor, and by that time, I had a significant concern that something was wrong. As it turned out, there was, but not at all what I thought.

My doctor’s appointment was actually for an annual physical (which I hadn’t done in three years), and the doctor went through the normal process of poking and prodding, lab tests and EKGs, and medical history. Toward the end of the office visit, I mentioned almost as an afterthought, “oh, I’ve also got this weird thing going on with my left hand and arm – it hurts and feels stiff, and my hand shakes sometimes. And when I try to move it fast like this –“ (as I rapidly clenched and unclenched my right hand), “I just kinda lose control of it.” As I demonstrated, my left hand began to jerk and twitch, and I couldn’t force it into a rapid, smooth clenching movement. It was almost amusing – it looked like I was holding a hand-shaped fish that was trying hard to get away from me. “So, what do you think THAT’s all about?”

We discussed several possibilities, all having to do with orthopedic or joint problems. I had injured my neck in college, and I have a minor amount of injury induced arthritis there – the doctor suspected that. In addition, I had injured my shoulder in a skiing accident (I wish I could claim that it was something spectacular like jumping out of a helicopter onto an untracked snowfield; the truth is that I fell over in the liftline), so that was a potential culprit as well. The doc gave me a referral to see an orthopedic surgeon about my neck and shoulder, talked to me about referred pain and the wide-ranging effects of neck and shoulder injuries, and off I went to get it checked out.

I ended up seeing several orthopedic surgeons for my neck, shoulder, elbow, and hand (I had no idea that they would be different people – the level of specialization is amazing), received many cortisone injections, had a series of MRIs and x-rays, and finally was referred to a neurologist for an electromyelogram. This joyful procedure involves electricity and needles, and even though it was done by a very pleasant and competent neurologist in a modern facility, I kept imagining I heard screams from the dungeon.

The EMG turned out to be “unremarkable.” I discussed the results with orthopedic surgeon #4, and asked what I should do next. He told me he thought I had cubital tunnel syndrome (a nerve problem in the elbow that’s similar to carpal tunnel syndrome in the wrist/hand), and that I would improve with a type of surgery to reposition a major nerve to reduce irritation and pressure. By this time, I was feeling a little irritation and pressure myself, and I asked if the surgery would address the shaking and stiffness as well. He said, “well, I really don’t know what that’s about, but I think you should consider the surgery.”

I still didn’t know what was really going on, but I had the sense that elbow surgery wasn’t the answer. By this time, other weird symptoms had begun to emerge. I noticed that I had stopped swinging my left arm when I walked, which I attributed to the supposed shoulder injury. And on a business trip with a colleague, as we were walking back to the hotel from dinner, he asked me, “why are you limping? Overdo it at the gym?” I hadn’t really noticed, but I had begun to walk with an uneven gait, and to drag my left leg slightly. I also noticed that my left hip had begun to ache like my left arm.

Even as all these physical signs began to emerge, I had a tendency to explain them away individually – the shoulder was from the ski injury, the neck was from the college injury, the tingling and clumsiness in my left hand was due to nerve damage from either the neck or shoulder, the elbow pain was from carrying scuba tanks for a class (I was a scuba divemaster by this time) , the leg pain was from muscle strain at the gym or maybe from the new shoes that didn’t quite fit…and on and on.

Finally, my wife suggested (as wives do) that I go see an internal medicine specialist. Her recommendation to me was that I stop seeing specialists about supposed self-diagnosed problems, but that I let a broad-based physician look at me from a whole-person perspective. I was reminded yet again that my wife is much smarter than me, and I forget that at my peril.

The internist ran me through a series of detailed tests, and conducted a physical exam that included what I would later recognize as the neurological “hokey-pokey” exam. You know the one – tap your fingers, turn your hands, tap your heels, put your left leg in, take your left leg out… He also arranged for an MRI of my brain, since, as he put it, “with your symptoms, a brain tumor is always a possibility and needs to be ruled out.”

Brain tumor? Brain tumor?? Elbow surgery isn’t looking so bad after all – let’s go back to that. I spent an hour in the tiny, noisy tube, and collected my MRI films and x-rays when they were ready. The internist had arranged an appointment with a neurologist to discuss the imaging tests, and so on July 7, 2009, about 7 years after I first noticed the persistent ache in my left arm, I met with the neurologist.

As it turned out, it was the same neurologist who had done my medieval torture test (the needles and electricity). We reminisced, and he spent some time looking at the brain images and pronounced them “unremarkable.” I thought that was a good thing. Then he ran me through a much more comprehensive “hokey pokey” neurological exam, which took ten to fifteen minutes. Then I asked The Question.

“So, what do you think is going on here?” I wasn’t sure what I expected to hear, but it certainly wasn’t what he said.

“I’m sorry, but your symptoms, tests, and medical history indicate parkinsonism, most likely idiopathic Parkinson’s disease. We’ll need to do more tests, but I’m fairly confident that’s what it is.”

My first thought wasn’t the most complex one I’ve ever had – it was something like, “Naaaah. Can’t be. Too young.” I raised several objections, which he patiently addressed:

– “I’m too young.“ Parkinson’s affects people of all ages, although it’s more common after age 60. I likely had something called young-onset PD.
– “It’s only on one side.” Parkinson’s starts that way, and for some people stays that way.
– “I don’t shake all that much. Isn’t Parkinson’s about tremors?” Not every person with Parkinson’s has a significant tremor, especially in young-onset cases. Most will eventually develop at least some tremor (mine has gotten worse in the last two years).

He talked with me about my objections and concerns, and then told me he wanted to start me on a medication to verify that I was dealing with Parkinson’s disease, in something called a “drug challenge.” At that point, I heard the word “Sinemet” for the first time, not realizing what a big part of my life it was to become.

Looking back, the crooked path that I followed and the symptoms I experienced (and others that I had but didn’t realize were associated with PD) are all very common. In the words of a movement disorder specialist I saw in Houston for what would turn out to be a fourth opinion, I am a textbook example of young-onset Parkinson’s disease. It’s almost impossible to see it while it’s happening, but in retrospect it fits together like a puzzle.

I have all four of the cardinal motor symptoms of PD – tremor, bradykinesia (slowness in movement), rigidity, and balance problems (also called postural instability). However, a diagnosis doesn’t require all four. In addition, I have other motor and non-motor symptoms that are a part of PD that I didn’t associate until after the diagnosis. Some of them are unlovely and a bit difficult to talk about, so I’ll spare you the details (come to one of our support groups and I’ll talk your ear off). Somewhere along the line, however, I lost most of my sense of smell – I used to be an enjoyer of a nice glass of wine, and over the years I lost interest, because I could no longer smell or taste it. Much of the sense of taste is actually smell, and a very common Parkinson’s symptom (often one of the first) is loss of the ability to smell.

My path was convoluted and frustrating for me, but not at all unusual. PD is sometimes difficult to diagnose, especially in younger people, since the symptoms can be subtle and gradual and there are many other things that can cause similar effects. In addition, doctors have a saying that I’ve heard a lot in the last couple of years: “When you hear hoofbeats, think horses and not zebras.” PD is something of a zebra, and is unusual enough in a younger patient to not be an immediate conclusion. I think that’s why I saw so many doctors, including my own family physician, without arriving at a diagnosis for so long.

That’s the end of one part of the story, but the beginning of another. In a future blog entry, I’ll talk about the first year following diagnosis, and dealing with the shock, disbelief, outrage, fear and depression that follows the diagnosis of a degenerative, incurable neurological disease. However, I’ll also talk about new friends and acquaintances, new sources of support, and a growing sense of mission.

What’s your story?

© 2011, Corey D. King

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