Monday, April 25, 2016

What's under the umbrella?

Dysautonomia is an umbrella term for many conditions that are a result of a diseased autonomic nervous system.


These are brief descriptions. To learn more, please follow the links.

(Before you get tooo far lost in the links, I'd like to remind you of the giveaway I'm hosting. It will be held on the last day of the A to Z Challenge, so next Saturday! See you there!)


NCS - Neurocardiogenic syncope is the most common form of dysautonomia, and it causes fainting.

MSA - Multiple System Atrophy is a rare and deadly form that affects people over 40. It is similar in presentation to Parkinson's Disease.

POTS/OI - Postural Orthostatic Tachycardia Syndrome/Orthostatic Intolerance often affects young females, and causes a constellation of symptoms that impair functioning at a time when most are trying to start their lives or finish their education.

OH - Orthostatic hypertension isn't on this graphic, but it is a condition under the umbrella. It has been studied in patients with POTS who also have mast cell disorder and can complicate getting a diagnosis because instead of a low blood pressure, they present with a high one.

AAG - Autoimmune Autonomic Gangliopathy is a rare form that is caused by the body attacking the ganglia (part of the nerve fiber) of the nerve cells. There are specific lab tests and therapies that make this form much different from the others. Some patients have a paraneoplasm which is a cancer that causes their AAG.

NMH - Neurally Mediated Hypotension means low blood pressure that is a result of the a malfunctioning nervous system rather than low blood volume, shock, or other 'normal' causes. It's a failure of the body to respond appropriately.

I had trouble finding a clear, clinical definition for Pandysautonomia. But what I found points to an acute and severe form seen after a viral infection. It is self-limiting and affects both genders, and recovery time can be more than a year.

PAF is Pure Autonomic Failure. It has a slow progression and affects men more than women.

Familial Dysautonomia (FD) is exceptionally rare. It only affects persons of Ashkenazi Jewish descent.

This list probably isn't comprehensive, and you might wonder why it matters which label is used.

Why not just call it all Dysautonomia and have done with it? Well, for one thing, insurance companies won't cover certain medications. For instance, I have NMH and if my forms don't say that, I can't get a newer medication called Northera. I know because recently there was a mistake on my paperwork and it was denied until I got it straightened out.

Another reason is testing and treatments vary for each of the forms. Someone with POTS is eligible to try the Levine Protocol with the supervision of a physician and physical therapist. A child with AAG can get IVIG therapies.

I, personally, find it easier in everyday language to say I have dysautonomia without having to list all the parts and pieces that make up my unique presentation.







2 comments:

  1. That's a nastier umbrella than Umbrella Corp. of the Resident Evil franchise...

    I guess I kind of view this similar to BPD where that's an umbrella term, but what is going on a ranging degree of severity among 5-7+ symptoms/illnesses. A certain number (I want to say 5, been a long time since researching) have to his a specific threshold for the diagnoses to be made.

    That differs in where this is a random Russian Roulette of possible symptoms that come along with POTS. All of them nasty :( That sound like it would be a nightmare to deal with insurance wise if certain ones didn't cover various symptoms/illnesses.

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  2. *knock on wood* So far, I've been lucky. I've only had that one time problem with the insurance co, and it was easily remedied by the physician's office getting it fixed.
    One of the problems I didn't mention in the post, but your comment showed to remind me, is that you have to see a DIFFERENT specialist for each body system. So, I have an opthamologist, cardiologist, neurologist, gastroenterologist, etc. It can get nuts.

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