Part 2

The second part of my writing project will be on the subject of Breaking Your Bad News. I am keen to hear from PALS that would be prepared to share their experiences.

A PALS Guide to ALS - Part 1. Diagnosis

Diagnosis

Most things about ALS feel like a kick in the teeth.

Sadly, the process of being diagnosed is no different. There are currently only three ways to verify you have ALS. Two tests involve genetic tests for a hereditary form of ALS, Familial ALS (FALS). The third test is conducted during an autopsy. I told you it was like a kick in the teeth!

That speaks to the tragic truth about ALS: theres no known cause, and no cure.

As a point of reference, less than 10% of ALS cases are diagnosed as FALS.

How do Doctors diagnose ALS? The simple way of answering is to tell you that they run tests for everything else, and when those tests eliminate every other possibility you're left with a diagnosis of ALS.

Tests usually endured on the way to a diagnosis include a barrage of blood tests, a magnetic resonance imaging scan (MRI), and an electromyography test (EMG).

An MRI involves dressing in one of those fetching hospital gowns that tries to leave your ass hanging out of the back, laying down on a table that then moves you through the MRI machine. A scan in an MRI takes between 30-60 minutes. Modern MRI machines have come a long way, but you still won't find a quiet MRI unit...buzzing, clicking, and pulsing noises can be unsettling, but they are to be expected. People with private insurance should be prepared for a large bill from their insurance company. My bill, with good insurance , was over $200.

The basic purpose of an EMG test is to measure the electrical activity produced by your muscles. There are two forms of EMG tests; surface and intramuscular. A surface EMG, as the name suggests, is non invasive. Intramuscular EMGs use a super-fine medical needle connected to a wire, and insert the needle into the muscle being tested. An intramuscular EMG sounds painful, but the tiny needle, I found, was no worse than a small bug bite. In fact, I barely felt a thing. The test can be fairly prolonged, since a large sample of data is required to produce an accurate report. My test was just shy of an hour.

Occasionally, in the course of seeking a diagnosis, a qualified doctor may perform a lumbar puncture, which sometimes goes by the name “spinal tap.” I have yet to experience a lumbar puncture, so I can't speak to level of discomfort experienced during to procedure. A lumbar puncture is performed to draw cerebrospinal fluid. The fluid is then analyzed to rule out genetic issues.

After an initial barrage of tests, your physician should have narrowed down your diagnosis to some sort of motor neuron disease, but a second opinion should be sought. Actively explore your options for a second opinion. Try to find a research hospital that has experience in treating ALS patients. I live in rural Virginia, and was first diagnosed at a regional hospital. I was given two choices for my second opinion, and settled on Johns Hopkins.

The process of obtaining a second opinion is a very good opportunity to jump into the ALS community. Hospitals and clinics that specialize in the treatment of ALS tend to have a much more comprehensive support structure. My visits to Johns Hopkins, while a long round trip, tend to be a very efficient use of my time. I see physical therapists, occupational therapists, and representatives from national organizations like the MDA and ALSA. I also found it fairly simple to gain access to drug trials by visiting Johns Hopkins. Perhaps it is their status as a research hospital, but the staff there always seem to have their ear to the ground regarding drug trials.

Note: an EMG should be performed by a qualified doctor.

A PALS Guide to ALS - Introduction

I wouldn't say there is a dearth of information for someone recently diagnosed with ALS. Nor is there an overabundance of information that serves the recently diagnosed…

...Well,not in a way that made sense to me. Specifically, not in a voice and tone that resonated with me.

I wanted my information presented almost like a conversation in style...in a pub…over cold beer(s)…with an endless supply of unhealthy food...and an occasional game of pool.

Perhaps that’s the better way to describe my approach; more like ALS for Dummies than a medical journal.

That being said, while I aim for a more casual approach, I want to be clear that I strive to be precise and up to date whenever I'm quoting research and statistics.

Lastly, I refer to this project as a roadmap because every patient with ALS starts their journey from a very similar place, and end at the same place. Our paths will be different, for sure, but we will face many of the same obstacles and choices. I hope this effort is of some use. I hope it helps to inform you as you face some difficult decisions.

Pals guide to ALS

I have decided to give this project a shot.

But I also think a short disclaimer is in order; I don't claim to know everything there is to know about ALS and MND, and I encourage readers to offer their own insights and experiences.

...time to work on my introduction...