Being Undiagnosable (7)

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Aug 312010

Part 7: Surrender

[In part six of this series I paused to summarize my efforts so far in my quest for a diagnosis.]

Step one

We admitted that we were powerless.

A lot of people who start up in 12-step programs have trouble with the first step. Personally, I’ve always liked it.

Our lives had become unmanageable.

To me has, that has always seemed like simple statement of fact about the human condition. We are, when it comes right down to it, powerless over our unmanageable lives.

That’s not to say that I don’t often resist this truth. Like everyone else, I try to create the illusion that I’m in control of my own life.

But the wiser part of me, the existentialist in me, knows better. This part of me doesn’t believe that our lives are guided by some intrinsically meaningful forces, higher powers that are waiting to be discovered. This part of me understands that the only meaning in our lives is the meaning that we ourselves create.

People often balk at that. The idea that our existence has no meaning seems, on the surface, so negative.

But I actually find it to be a tremendously affirmative statement. Because if our lives do not come with pre-determined meaning, we have this incredible freedom to make meaning from our experience. That freedom is both invigorating and terrifying. Because, of course, along with that freedom comes a sobering responsibility.

Still, I understand that this is not the most popular way of understanding human existence. If you’re even a little bit religious, the idea that life is meaningless is…well, sacrilege. And if you’re in the 12-step world, you think of powerlessness and unmanageability as symptoms of an illness. They’re problems to be resolved, not conditions to be tolerated.

But I would argue, using a bit of Buddhist logic, that much of human suffering is not the result of our powerlessness itself, but rather that it comes as a consequence of hanging on too tightly to the illusion that we are ever other than powerless over our unmanageable lives.

To be clear (as I have said before), I’m not against religion at all. But I am deeply, profoundly agnostic. I’m not against 12-step programs either. Quite the contrary. I refer my clients to them regularly. But personally, I can never truly move on to the second step. For all the reasons I’m describing, that whole higher power thing just doesn’t sit well with me.

So my personal 12-Step program is pared down. It’s a 1-Step program. Just keep taking that first step, over and over again.

I don’t need or expect you to agree with me on this. I’m describing it simply so that you can understand the decision I was about to make for myself with regard to my own search for a diagnosis.

I took the first step. I acknowledged that I was powerless over my own diagnosability. But I needed to figure out where to go from there. Since there was no higher power to “restore me to sanity,” how could I find a way to remain in that powerless state?

I turned to the only true guide I know for dead-end situations and that is Victor Frankl, who describes so powerfully how the only absolute power we ever have is the power to shape our attitude toward our experience.

I began to ask myself: what attitude did I want to take toward my own health? What meaning could I make of it?

Homeostasis

In the Spring of this year, as the anniversary of our trip to Mayo came and went, I was settling into an awareness that there were no more doctors left for me to see. There was not a specialty I could think of that might offer any new or different perspective on my undiagnosed symptoms. It really seemed like I’d reached the end of the line.

Nothing much had changed with regard to my symptoms. They were always evolving, but they’d seemed to reach a sort of homeostasis. They ranged from annoying to worrying to occasionally debilitating, but they weren’t getting significantly better or worse. The muscle spasms had grown somewhat less intense, although they occasionally flared up. The fatigue had improved a little bit after the sleep studies, but I was still subject to intermittent bouts of overwhelming exhaustion. Most things came and went with varying degrees of intensity – the migrating neurologic symptoms, the metallic taste, the waves of “cellular” pain. The cognitive fog was probably the most constant and bothersome symptom. I felt constantly at a slight remove from everyone around me, and most of the time it was just plain hard to think.

So things weren’t great. But they also didn’t seem dire. It seemed likely that I could go on living like this indefinitely.

And I’d grown so tired of going to doctors.

So I began to ask myself: what if this is it? What if the answer is that there is no answer? What if this condition is truly undiagnosable?

I confess that I felt some relief in allowing myself to ask this question. The cycle of hoping for an answer and not getting one had worn me down. It was mentally and physically exhausting. And, more importantly, it kept me focused inward, constantly monitoring my symptoms, which prevented me from being able to direct energy into my work and my relationships the way I wanted to.

So I began, for the first time, to let myself consider a possibility that had seemed unthinkable earlier. Perhaps this is simply the condition of my life from now on.

In the past this admission would have seemed like a weakness. Like I was quitting because things had gotten too hard for me. But the more I considered it, the more it actually seemed like the only sane approach to take. It was a way of changing the terms of my relationship to my own health. Rather than let my symptoms control me, perhaps I could decide for myself how much influence I gave my them over my own self-definition.

I accept

I asked myself what it would take for me to let go of my search for a diagnosis?

I would have to find a way to treat my symptoms with equanimity.

I would have to find a way to re-focus my energy on the future. One of the ways in which my illness had affected my thinking was that it limited my awareness of my own future potential. It had narrowed my vision, kept me from attending well to any long-term goals.

And more than anything, I would have to find a way to take a positive attitude toward my own life. I’d spent so much time wondering about the ways in which my existence might be curtailed…it would be a significant shift to focus instead on what was possible.

I understood the techniques for making this cognitive shift. After all, I taught them to my psychotherapy patients all the time. And I practiced them in my own half-assed but heart-felt meditation practice. It was a matter of mindfully attending to the ways in which I held my symptoms in mind. Trying not to attach to those symptoms as the definition of my entire being. Instead, I could just notice them and let them go.

When I felt a muscle spasm, for instance, what did my mind do with it? I had a choice about how much emphasis I gave it. I could start scanning anxiously for other spasms, reviewing when and where they occurred. I could make spasms the filter through which I understood the world.

Or I could just let it go.

I received some unexpected assistance in this work of shifting my thinking from my weekly yin yoga class. Yin yoga was one of the few things that had actually made me feel better during all of this. It’s a practice which emphasizes the slow stretching of the body’s connective tissues. Most of it is done on the floor. A pose might be nothing more than a simple, forward fold, held for four or five minutes. You try to relax your muscles, to give yourself access to the deeper tissues. It has helped me in ways that seem to me to be beyond words.

At the beginning of one class the instructor had us do a very simple breathing exercise. Breathe in deeply. Then exhale. And at the bottom of the exhale, the pause before the next breath began, say to yourself: “I accept.”

She didn’t give any instructions on how to direct that acceptance. But I felt immediately what it was that I was needing to accept. And breath after breath, as I spoke those silent words to myself, I sunk deeper into the awareness that acceptance was what I needed more than anything. I was on the edge of tears. This is the state of my life, of my body, of my mind. This is my existence. This is what is.

I accept.

The bottleneck

I made a list at the things I wanted to accomplish in the near future.

In addition to everyday household and parental tasks and the work of maintaining my private practice, most of my list involved things I wanted to do to begin promoting my upcoming book. I wanted to put together proposals for presentations I could make at conferences. I wanted to produce a short video. And I had a fantasy of composing music for some or all of the chapters in the book.

All of these things had come to feel overwhelming to me. Before my health had gone south – before, especially, the brain fog had set in – I could have moved through each of these tasks fairly quickly. I would have been able feel the satisfaction of completion. Now I was going to have to learn to take satisfaction in much smaller steps. In order to feel like I was moving forward, I was going to have to look at these things with a much longer time frame.

Because the simple truth was, I didn’t know, day by day, just how much energy and concentration I’d be able to muster. I usually had a few decent hours in the morning, but the afternoons were a total crapshoot. There were often times when I had two or three open hours to work in the afternoon, but when I sat down to do it, my mind simply froze. I would read the same sentence in a book dozens of times without being able to move forward. I would stare at my notebook, unable to conjure a single coherent thought.

In the past I would have been able to power through these blocks. Because of this habit, it took me quite awhile to realize that things had changed. It was exceedingly difficult for me to accept that it was pointless to try to keep trying. But it was true. When I felt like this, the best thing I could do was to lay down and take a nap. That, I slowly came to understand, was what my mind and body were really needing.

I felt it in my psychotherapy practice as well. Mercifully my caseload was very small at this time and limited to the mornings. Because seeing just two clients in a morning pretty much wore me out.

It was, as my wife kept saying to my doctors, as if I was about to turn 70 instead of 50.

The way I experienced it, it was as if my creative energy had once flowed through a broad pipe, but now one end of that pipe had narrowed into a very small funnel. There was only so much I could get through that bottleneck at a time. I had to develop a lot more patience, and also a bit more faith in my own ability to persist at a project that was moving in slow-motion.

Often I’d sit down to start writing (a piece like this, for instance, which I imagined I would post at least a week early than I actually am), and I’d find that my mind simply refused to function. I simply had to accept this limitation. I wasn’t going to finish the piece that day. It would get done when it got done. I wasn’t going to give up on it, but I wasn’t going to push myself to do what wasn’t possible.

Slowly, day by day, I found a way to accept this new reality. I learned to appreciate how much I was actually able to do, over time, in spite of how I felt. And that wasn’t just happy talk. It genuinely felt good.

The more I was able to get myself into this frame of mind, the more I felt relieved not to be spending all my mental energy focused on my health. I was able, with effort, to think of myself less as someone who was sick, and more as a person who was maintaining a small, successful psychotherapy practice, who was composing music and doing everything he could to promote his forthcoming book.

One last test

So there I was.

I was pretty much at peace. I wasn’t happy not to have a diagnosis. I wasn’t happy with the limitations I experienced. But I knew that I could move on with my life. Maybe things would get better. Maybe they’d get worse. Either way, there wasn’t much I could do about it. I had come to accept that I was powerless over my undiagnosability.

And this was where this story was supposed to end.

But then my wife opened another door.

While visiting her sister in upstate New York, she’d met a woman who called herself a healer. This woman offered to try to diagnose my condition through my wife’s energy. My wife agreed and at the end of the session the healer told her that I had babesiosis. I felt weary at the word. I didn’t know what it was, but I felt overwhelmed by the mere idea of starting up again on another fruitless quest to get a diagnosis.

My wife expected me to be skeptical and I was. The arguments spun around in my head. I’d started down this path so many times. How could this possibly be a proper way to diagnose anybody?

But then again, I told myself, if I was open to having chickens sacrificed in my kitchen, I ought to stay open to this as well. I looked up babesiosis and learned that it was a tick-borne infection that commonly co-occurred with Lyme Disease. The symptoms resembled those of Malaria. My symptoms weren’t malarial. And I’d already had a test for Lyme. Upstate New York was Lyme Disease territory, so of course that’s the sort of thing she’d come up with. I’d never heard of anyone with Lyme in Montana. It just seemed sort of wacky.

Still, my wife said, what’s the harm in getting you tested for it?

She was right. What was the harm in that?

[Part eight of this series will describe the unexpected turn of events that began with this "final" test.]

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Being Undiagnosable (6)

6 Responses »

Aug 252010

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

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.]

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

To sum up

Doctors and other medical professionals who have examined and treated me

· Internist

· Endocrinologist

· Cardiologist

· Oncologist

· Gastroenterologist

· Neurologist(s)

· Physical therapist

· Nutritionist

· Allergist

· Rheumatologist

· Sleep specialist

Blood tests performed

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.

· 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:

o 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.

o 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.

o 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.

· 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.