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What Seeking Treatment for Autonomic Neuropathy Looks Like

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I have wondered for the last 10 years what was causing my seemingly mysterious conditions. They seemed to appear one after another. Pyramiding as the months and years have passed by. It began with simple enuresis. At the age of 25, it seemed odd. What would cause such a
condition to come out of nowhere for a person my age with no seeming history of incontinence?

Backstory: I was diagnosed with bipolar disorder in 2008 and treated with multiple psychiatric medications. Some of the doses were at higher than average levels to control my mood instability. I was experiencing rapid-cycling episodes that were difficult to control. So my physicians did their best at regulating my condition. However, there were some side effects of the doses I was prescribed that would appear later on in life. I have been taken off all of the medications I was originally prescribed and given all new medications that have worked out rather well. I have been stable for around two years now with very little mood instability. So things are looking up for my mental health. However, it is my physical health that is suffering.

The enuresis was just the start. I began to have other episodes of incontinence in the daytime as well as at night. I began wearing adult diapers to control my incontinence condition. It was a mystery that I had to solve. I saw a urologist in 2009 who performed several exams to try to pinpoint where my condition was coming from. He hypothesized that my urinary issues were caused by the heavy doses of psychiatric medication I was taking at the time. Fast forward several months and I began to have chronic digestive issues, such as further incontinence, dysphagia, heartburn and IBS. I saw a gastroenterologist in 2010 who clarified that my ailments were caused by continuous mood stabilizing medication therapy. I had testing such as a colonoscopy and my first endoscopy (I’ve had three), MRIs, CT scans, X-rays, blood work, etc. It has not been fun to say the least.

I began to wonder if my conditions had a neurological component. I was evaluated by my first neurologist in 2011 and was diagnosed with peripheral neuropathy. But, it was still early in my treatment to make further determination. There was not enough evidence at the time to support a diagnosis of autonomic dysfunction. I did not meet several criteria.

In 2012, I began having trouble breathing. I developed adult-onset asthma. I was a former triathlete and marathoner. I served in the U.S. Marine Corps for six years and had no history of breathing dysfunction. So this too was odd. I went to a pulmonologist who did a pulmonary function test, more CTs, more bloodwork and a sleep study which revealed nocturnal hypoxia. I was placed on oxygen therapy at night and given an inhaler. The evidence was starting to add up.

I lived with my conditions wondering if they were all connected. I began to do my own research. Then, in 2016, I brought my concerns to my new primary physician who listened to my apprehensions. She did not write me off as an anxiety case like other physicians I have seen. She then referred me to a new neurologist at a leading medical group specializing in brain and nerve disorders. I described to the new neurologist all of my ailments. I described everything named above including alternating bradycardia and tachycardia. I described hypertension and a few episodes of syncope. I also had periods where I would randomly stop breathing, almost as if I was forgetting to breathe. This was not a conscious condition. I also had times where my heart would beat through my chest and my pulse would race to as high as 200 beats per minute. The neurologist made a preliminary diagnosis of autonomic neuropathy and referred me to cardiology who also ran tests such as bloodwork and a 24-hour holter monitor test. I had ANSAR testing as well to check for autonomic dysfunction of the sympathetic and parasympathetic nervous systems. This posed to be a mystery; however, he too believed I had some form of autonomic dysfunction.

I was finally referred to the Mayo Clinic where all the pieces came together. At Mayo, it was discovered why I had what was thought to be cold and/or heat intolerance. Basically, I lack the ability to sweat which makes heat-related illnesses very real for me. Through what seemed to be dozens of visits followed by yet more tests, I finally had an answer. The diagnosis was confirmed as autonomic neuropathy secondary to my medical treatment for my mood condition. It has been described to me as very rare.

My diagnosis has taken almost 10 years to receive. I’ve heard from other people with related conditions that it is an average timeline for receiving such a diagnosis. For many people such as myself, these autonomic conditions appear over the course of years which is why it takes so long; however, for some that is not always the case. But, alas, at least now I know what I’m fighting. And I’m not going to go down easy.

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Thinkstock photo via -Robbie-.

Originally published: November 8, 2017
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