I have more than one weird health problem/challenge, but the most controversial one yet is an Autonomic Nervous System Disorder. The Top 5 facts you should know about ANS Disorders, in no particular order are:
1. Most medical professionals (doctors, PAs, nurses, technologists) have never heard of autonomic system disorders! Therefore, they don’t have the slightest idea what to do with someone who presents with any of the permutations of this family of disorders.
2. There is a cavernous disparity between the two major disciplines that are often called upon to treat these disorders: cardiologists and neurologists. Most of the specialty clinics that treat these disorders (in the US, there are only FIVE such NIH-recognized” clinics) don’t actively look at the disorders from all angles (cardiology, neurology, autoimmune, electrophysiology, etc.) – only two of them, Mayo and Vanderbilt, seem to have embraced the multi-disciplinary approach to the diagnosis and treatment of these disorders. (The clinic at which I was “diagnosed” leaned strongly to a pure neurological paradigm and thus, informed me that I “didn’t fit the normal criteria” for what they “usually saw.” Then, they just ignored me!)
3. Most of the people affected with autonomic disorders are usually older folks, over 60, and have one of two underlying disorders: Parkinson’s and diabetes. Unlike the young folks affected by autonomic dysfunction who have symptoms because their body growth outpaced their nervous system adaptation (POTS), older patients’ have symptoms because of the degeneration of their nerve fibers or the connections between nerves. As for those of us that have onset of symptoms between 30 and 50, there are at least 20 (or more) possible causes. However, onset in midlife is rarely POTS, but sadly, patients are usually misdiagnosed by doctors that only have familiarity with this one autonomic disorder of younger folk, and they quickly apply the label despite the patients’ symptoms being outside the diagnostic criterion for the disorder. (One such article that discusses the myriad of POTS diagnoses then states that these may not be accurate is the following: POTS,Journal of Cardiovascular Electrophysiology, Volume 20, Issue 3, pages 352–358, March 2009.)
4.Many doctors skip over the fact that there are several commonly used medications that can mimic symptoms of an autonomic disorder. My doctors insisted that I remove every single medication that I was taking out of my system before testing me for the disorder. This is the only way they (the experts) can get accurate reading of whether or not they’re dealing with a true biological ANS disorder or something that is drug-induced. I continue to be completely shocked and amazed that people who complain about this having this disorder, yet they openly publicize that are on several of the medications that clearly have side effects that mimic ANS symptoms.
5. People with most autonomic disorders are usually not able to completely control their symptoms with diet, exercise, and medications. Since the specific cause for their disorder is usually unknown, treatment is usually in the form of addressing individual symptoms. This makes living a normal life very difficult. It is near impossible to plan events with friends, work a job, or go to school, which makes living with an autonomic disorder very lonely. Even getting to scheduled doctor appointments can be a huge challenge. The exception to this fact seems to be the true POTS crowd (not the misdiagnosed POTS folks). They are unique in that they are able to continue their school, social and sports endeavors. Interesting.