We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article was originally published in 2015 but we know that with every new diagnosis, this story can help a family, patient or caregiver in need of camaraderie and support. As we jump into 2017 we’re #LookingBack on some of the most poignant stories of previous years. Take a look at this story about Ankylosing Spondylitis.
We last left Allen’s story where this brave soldier had to leave the service due to the immense pain caused by a mystery condition. To get caught up on the start of Allen’s road to diagnosis, check out part 1.
Life just seemed unfair. Why was Allen in so much pain? Why would nobody listen to him? And why couldn’t anybody figure out what was wrong? His life was wasting away before his eyes and he was swamped with the harsh reality that there may never be a rhyme or reason to his pain.
Regardless, in 2007, Allen began a job for a well-known furniture company. He did his best to build chairs like he was hired to do, but suffered with pain tremendously. It remained unbearable. So, he went to a specialist. And again, work sent him home with a swollen spinal cord.
His pain caused him to quit that job, then he bounced from one temp job to another until he landed a great job in Joplin, Missouri in mid-2008.
Long story short, Allen lasted a week at his new job because he came down with what was later discovered as a case of the West Nile virus. But, unbeknownst to Allen at the time, the virus was a blessing in disguise because it brought him to the VA which would ultimately lead to the six words that could bring him to his knees.
In his first appointment, Allen detailed the problems he’d been having with this back and foot. The feedback was nothing new. “There’s nothing we can do,” the doctor said. Allen had become used to this response; what else could he expect? But by this point, Allen’s foot had taken over as the most painful, so he asked to see a podiatrist. But there, the trend continued—“nothing was wrong,” “there’s nothing we can do.” Even though, quite clearly, one of Allen’s feet was a full inch and three-quarters bigger than the other. Over the next two years, Allen visited two more podiatrists with the same results. He got to the point where he even asked the doctor to cut his foot off. Literally cut his foot off. They refused.
From 2008 to 2014, the same treatment continued. Doctors told him all of the same things—“There’s no reason for you to be in pain,” “it’s in your head,” “you just want pain killers.” The backlash and questioning sent Allen into depression. Then, when Allen’s regular physician retired, he was given a new doctor. At his first appointment, Allen went over his symptoms, got the painkiller, and was asked to set up an appointment for yet another podiatrist. He reluctantly went.
There he was, sitting in another doctor’s office, just waiting for another misdiagnosis and bottle of pain meds. It’d become routine; he’d come to expect nothing more. But then, something happened to Allen that hadn’t happened in his decade-long journey.
“This isn’t just in your head,” the doctor said.
Immediately, Allen burst into tears. The feeling was overwhelming. Nobody had ever said anything remotely close to what this doctor had just told him. Finally someone believed him. Finally something could be done. Finally there could be hope.
“I think I have an answer for you, but I want to draw some blood and run some tests,” the doctor said. So he scheduled an MRI and asked Allen to see a rheumatologist.
It was the moment of truth.
“Have you ever heard of ankylosing spondylitis?” he asked.
Allen hadn’t. “What is it?”
Ankylosing spondylitis (AS) was the answer he’d searched tirelessly for. The back pain, the eye swelling, the foot pain, fatigue, and other symptoms began to make sense. The relief was indescribable, but not long after, Allen’s blood began to boil. Along with his AS diagnosis, the doctor told Allen that both of his hips were dead and would need to be drilled to stimulate new bone growth, or replaced. Allen also has avascular necrosis, all because the disease went undiagnosed for so long.
Presently, Allen is feeling a little bit better. He’s waiting to find out the fate of his hips. There’s days he doesn’t feel great, days he feels like he’s been “flat run over,” but it is better now.
The diagnosis even helped diagnose his own dad who had been suffering from similar symptoms for thirty years. But the downsides continue. The VA doesn’t think Allen needs to continue on a pain killer much longer, but he disagrees. Some days he can’t even stand long enough to wash a sink of dishes.
But now, at least there is some kind of hope. He has ankylosing spondylitis. So when he wakes up in the morning, if he can’t move, at least he’ll know why.
Allen’s story is not isolated. Thousands if not millions of current or former soldiers are misdiagnosed, mistreated, and overlooked when it comes to sicknesses and illnesses.