Being Undiagnosable (6)

Part 6: The Story So Far…

[In part five of this series I discussed traveling to the Mayo Clinic in search of a diagnosis, and I described alternative treatments I explored.]

To sum up

If you watch “House, M.D.,” you’re familiar with those meetings in which the doctors put all patient’s known information on a board, which they then study for hidden patterns. Here’s what the board looked like for me as I began writing this series.

Doctors and other medical professionals who have examined and treated me

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• Internist
• Endocrinologist
• Cardiologist
• Oncologist
• Gastroenterologist
• Neurologist(s)
• Physical therapist
• Nutritionist
• Allergist
• Rheumatologist
• Sleep specialist

Blood tests performed

Multiple tests over 2+ years, for a variety of conditions, including: hormone functioning (testosterone and thyroid levels), rheumatoid arthritis, Epstein Barr, heavy metals, Lyme Disease (ELISA), Myasthenia Gravis. In addition to tests for specific conditions, a wide range of standard indicators were tested. With the exception of a light elevation in my liver enzymes, probably the result of the statins I take to manage my cholesterol, all of these tests came out negative.

Other tests performed

• Stress echochardiogram
• Esophagogastroduodenoscopy (EGD)
• Ultrasound of thyroid
• CAT scan – abdominal
• MRI scans – brain, cervical spine, lumbar spine
• Electromyography (EMG) and nerve conduction test (2)
• Autonomic reflex scan (QSART)
• Thermoregulatory sweat test
• Nocurnal oxymetry
• Nocturnal polysomnogram (2)

Results of these tests

• A few small spots showed up on the CAT scan, almost certainly benign but worth tracking due to my cancer history.
• Mild disk degeneration showed up on the MRI.
• Mild carpal tunnel syndrome showed up on the EMGs.
• Some autonomic neuropathy in my feet was found in the thermoregulatory sweat test.
• Sleep studies (not discussed in prior posts) showed a low level of sleep apnea – hypopnea – which has been effectively treated with a sub-clinical dose of amitriptyline.

A few of the illnesses and conditions that seemed to have been ruled out by these tests

ALS, MS, Parkinson’s, Multiple Myeloma, Celiac Disease, Lyme Disease, heavy metal poisoning, Chronic Inflammatory Demyelinating Polyneuropathy, Rheumatoid Arthritis, HIV/AIDS, a recurrence of Cancer, including Paraneoplastic Syndrome, Autonomic Nervous System disorders including Postural Orthostatic Tachycardia Syndrome, Cardiac disorders of any nature, Polymyositis, Amyloidosis, Whipple’s Disease, Giardia.

Treatment suggested by the medical professionals after reviewing these tests

• Physical therapy
• Psychotherapy

Alternative treatments I’ve explored

• Acupuncture
• Chinese herbs
• Therapeutic massage (Rosen method)
• Yin yoga.
• Hmong shamanic healing ceremony

Symptoms

As of mid-summer, 2010. Many of these have been describe in previous posts, some of them are new or have evolved.

• Perceived muscle weakness
• Exercise intolerance
• Orthostatic hypotension Occasional intense light-headedness when rising from a sitting or crouching position.
• Episodes that mimic hypoglycemia Which include but go beyond the light-headedness described above.
• Fatigue fluctuating in intensity but nearly always present to some degree, and intermittently crushing. It’s usually pretty bad in the afternoon (so I try to get as much work as I can done in the mornings). I find that I do reasonably well when I get ten hours of sleep (less than that and all the other symptoms get worse), and/or when I have the opportunity to nap in the afternoon.
• Pain Migratory and fluctuating in intensity. It is most commonly a diffuse sort of pain which I can only describe as “cellular” – meaning that it feels like it’s an accumulation of pain emanating from all of my cells. So rather than being focused in one part of my body, it feels more like a cloud of pain that engulfs me. It’s a bit like the ache you get with the flu, but it’s not even as focused as that. In addition to this diffuse, cellular pain, I also get more acute, focused but migratory pain in my joints and muscles. Sometimes it feels clearly like nerve pain – shooting, electrical shocks that hit the tops of my feet or my thighs or my upper arms. Other times it’s just a regular old pain, like the ache you feel after having been punched.
• Neck pain I separate this from the rest of the pain because it is a recent development and because it has a different quality. I first noticed it late in the Spring during my yoga class. I thought that I had strained a muscle in my neck. But it hasn’t eased off, the way a pulled muscle does. Rather, it’s gotten worse.
• Sexual dysfunction My earliest symptom has remained, although my understanding of it has evolved somewhat. Rather than being a circulatory issue, it feels clear to me that the larger issue is that the bottom has dropped out on my libido. While my body is capable of achieving an erection, there’s little or no fuel available with which to kindle or sustain a sexual fire. In other words, it still feels like a hormonal issue. Even though my testosterone and thyroid levels have been supplemented until their blood levels are optimal.
• Weight changes From a high of 187 pounds in January of 2009, I reached a low of 157 in June of that year. Since that time I’ve gradually regained much of that weight and I’m currently in the 175-180 range. The changes in my physique have remained, however. The muscles in my arms and legs look different than they used to in ways that are difficult to describe. It’s hard to say whether the muscles are more defined, or the spaces between them are less so. In general, my body seems bonier than it used to be.
• Neurologic symptoms These are numerous and often so bizarre that it is difficult to describe them. They include:
  • Fasciculations Muscle twitches and spasms. Although they vary in intensity and location, they have been one of the most constant features throughout all of this. Sometimes they’re very intense, other times they’re mild. Sometimes they hammer away at one spot on my body, other times they seem to hit all over the place, randomly. Sometimes they bubble around constantly, other times they’re just sporadic, random blips.
  • Numbness, tingling, and buzzing This is a catch-all category for a variety of odd experiences. I have areas on my body – especially the outside of my legs below the knees, and on the tops of my feet – that feel like they have been permanently shot up with novocaine. In addition, I experience varying degrees of tingling numbness in various parts of my body, but especially in my hands and feet. When I lie down, the soles of my feet feel like they’re burning. And I’ve started to experience a distinct “buzzing” feeling which is different from both the fasciculations or the tingling or the shooting nerve pain. It’s localized and it goes off in my body the way a cell phone goes off when it’s set to “vibrate.” It’s a discrete buzz that starts and then stops and then repeats, sometimes for hours. I can get it in the base of my groin. Or in my thigh. Or anywhere.
  • Migraine-like aura This is a new one. I’ve only had a true migraine a few times in my life and it’s been years since the last one, but I remember well the unnerving optical sensations that preceded them, the “migraine aura.” Lately I’ve started experiencing that aura again, but without the ensuing headache. It’s like a bright, jagged stimulus hovering in my peripheral vision. It can occur on either side.

• Metallic taste Started somewhere near the beginning of 2010. A strong, unpleasant taste in my mouth, usually metallic in nature. It’s not always particularly intense. It seems to come and go in cycles. But it influences me even when it’s not strong. For instance, I can no longer drink red wine. This metallic tastes gives it all a taste more or less like rubbing alcohol.
• Cognitive impairment This has probably been the most distressing of all my symptoms, because I rely profoundly on the agility of my mind in my work as a writer, a teacher and a psychotherapist. The cognitive fog that I experience can take many different forms, but I notice it most in the way that it affects the pace at which I can work. I’ve always got a running list of work that I need to do, which might include writing projects, including these blog posts, developing proposals for presentations (such as the one I’ll be doing at the American Counseling Association next year), preparing for teaching (as I’m doing now for the Ethics course I’ll be teaching to counseling students this Fall). It used to be that these tasks sort of flowed by. But these days, the list stays static for long periods of times because my ability to focus clearly and think well has become a bottleneck. It takes a lot longer to get things done. I sit down to read and I simply can’t make my mind absorb the sentence in front of me. I try to write or to compose music and I find my mind to be filled with mud. Days can go by like this. It’s bad when I’m working, but it’s even worse interpersonally. Often during conversations, I feel like the mechanisms linking my thought to my speech are malfunctioning. As a result, a simple conversation can be exhausting to me. Seeing more than a few clients in a morning wipes me out. And presenting before groups, while not impossible, is very challenging, and very exhausting.

Why I don’t want to tell you any of this

What does it mean for you – for anyone – to know these things about me? This is a question I have struggled with throughout these past two years.

Although it might not be evident from this blog, I am by nature an intensely private person. I know that I don’t have much control over the ways in which other people see me, and it’s precisely because of this that I like to have as much influence as possible over the things that I can control.

Mostly this has meant playing my cards very close to my vest.

But being sick and seeking a diagnosis, necessarily puts you in front of the eyes of others. And not just expose the gaze of the medical professionals whom you seek out for help.

Once you’ve been identified as being sick, everyone looks a little more carefully at you. They scan for the illness in you. Even more so when you’re sick without a diagnosis.

This dance between exposure and concealment is even more complicated in my case because my father happened to be a doctor and because he had an intrusive gaze. To make things worse, I grew up in a monolithic religious community, a religious organization which gathered and used personal information against its membership with a Stalinist zeal.

As a result of all of this, I learned some very effective ways to hold parts of myself out of public view.

What I figured out, growing up, was that seeing into the intimate lives of others gave you information about them, and that this information could give you power over them, which could be used in tremendously harmful ways.

As a result, I have lived my life guarding information about myself very carefully. I am constantly monitoring what other people know and don’t know about me. I can’t shut this part of my mind off, even with the people I trust most deeply in the world. Some part of my mind is always keeping track of what they have on me. I am never not aware of this.

(It’s not lost on me that I have chosen a profession in which I am able to experience the extraordinary range of human passion while simultaneously revealing very little about myself. I suspect that many, if not most, of my colleagues share some version of this trait.)

So, I am writing every word of these posts while containing my anxiety that they will in some way be used against me. In the simplest version, my fears are simply that you’ll think of me as someone who is whiny, helpless, unmasculine, weak, deluded, or attention-seeking.

I have worse fears than that, of course.

But for the moment I’ll keep them to myself.

Why I’m telling you anyway

Given all of this, I’ve wondered over the past weeks just why it is that I have felt compelled to tell this story publically. One answer has been that regardless how I imagine myself being perceived by others, this is the simple truth of my experience. Another answer lies in my awareness that being undiagnosable means more than just the accumulation of symptoms and tests and conditions that I’ve described above. On some level, undiagnosability is the human condition. It’s an existential truth: so many of our questions are eternally unanswerable. Finally, I’ve been writing this because of the simple recognition that my experience is not uncommon. There are many people who are desperately seeking a name for their seemingly unnameable suffering. Telling this story doesn’t give that suffering a name, but it does give it a voice.

But there’s something more. Something deeper.

It’s this. The experience of being undiagnosable has changed me. Writing this story is a sort of coming out for me. I’ve worn myself out over the years doing all the work it takes to keep myself so carefully concealed. Somewhere in all of this experience, something has shifted in my personality. That change took place during the period I will describe in the next post, the period in which I abandoned all hope of ever getting an answer. Giving up freed me, in utterly unexpected ways.

[In part seven of this series I will explore what it means to abandon the hope of finding a diagnosis, and how doing was essential for my well-being.]

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