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.

  1. Jackie says:

    I agree with you 100% about people needing to be off basically all meds before being tested for ANS disorders. I’ve had some terrible experiences with doctors happy to blame symptoms on medication with little or no knowledge about how long the medication effects the body. I once had a doctor tell me Adderall was still causing a rapid heart rate despite not having took it in 4 days and it having a half life of 12 hours. Number 5 is something everyone with a loved one with chronic illness should read and remember!

  2. kdsc says:

    What are your thoughts on someone who has had symptoms their entire life but not consistently bad (there are periods of worsening symptoms especially with the fatigue, energy levels, being able to get up, etc. but also good periods where you are functioning fairly well – though you never do feel quite “right”)? From my researching, the only thing I can figure is a part of it is an underlying cause along with the autonomic dysfunction… but I’m pretty new to ALL of this..
    Also, I saw you mentioned Vanderbilt.. that’s been suggested to me as a place to go since the hospital I went to in Philadelphia would not do further testing me (hence my other comment I made to you on a previous post). This is all so overwhelming and confusing and when you’re exhausted and out of sorts to begin with… it just feels like one big mess that will never get figured out.

    • Lori says:

      Based on the research I’ve found, and coincidentally, a conversation I had with one of my docs recently, it really sounds like CFS, or an autoimmune condition. Both are notoriously cyclical (I’ve had an autoimmune condition since I was about 12. The two CAN be related, but it is rare. My docs are still trying to figure out if the two conditions are related in me. Still. Sigh.) The symptoms of CFS are routinely confused with “POTS” – the research suggests over 50% of so-called autonomic issues are actually CFS. The criterion for autonomic issues are actually pretty specific – why certain docs are so eager to label some people with autonomic issues and some are exceedingly careful NOT to baffles me.
      I will be posting research in some of my future posts for this blog challenge. I am hoping that some of the research is helpful to you. There are several articles and papers that clearly list the symptomology of autonomic disorders…the Mayo Clinic has some absolutely excellent presentations on the disorders.
      My advice – stay away from the Facebook groups and any other layperson-oriented sites – they may mean well, but they are FULL of misinformation and misguided folks. Boy, did I get “misdiagnosed” by a certain group on Facebook – I made the mistake of joining every group I could when I first got the diagnosis – that’s how I learned about the huge POTS crowd and their strange need to own the “dysautonomia” diagnosis!!! Yeeeowwza! (When I responded to their not-so-niceness with bonafide research – they criticized THAT as well. I didn’t make the stuff up – its called SCIENCE – geez!)
      Thanks for your response and inquiry! I will keep your concerns in mind as I continue to gather research for this blog challenge!

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