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Post Appointment Confusion.

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Hey all,

Just had my post tilt table appointment at the cleveland clinic. I was told I have some kind of secondary POTS (can someone explain what "not true POTS" means?), low blood volume, and venous insufficiency. This all seemed very nonchalant relative to how I feel. He just said drink more fluid, eat more salt, and wear compression stockings and referred me to a neurologist (I was able to get an appointment next week). Hoping the neurologist can explain it more.

I'm frustrated because I was hoping a POTS diagnosis would be the end of my search for answers, but it sounds like it is just a label for a collection of symptoms and I still have to find out what is causing the symptoms. Can someone explain what primary POTS is as opposed to secondary POTS? Does secondary POTS have to do with the ANS too? Generally I feel more confused than I did before.

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If there is such a thing as true primary pots, it is a diagnosis of exclusion or idiopathic, meaning they can't find the cause. He is saying that you have the symptoms of pots secondary to a primary cause, that has yet to be diagnosed. He is referring you to a neurologist to try to figure out what is causing your symptoms that he has labeled pots like.

There are many neurological conditions that cause dysfunction of the autonomic nervous system. Small fiber nerve damage to the blood vessels is one of them and could explain his description. A skin biopsy can diagnose that along with blood test for the most well know neurological conditions that attack those nerves. Small fiber neuropathy, like pots, is not always end line diagnosis. Many disease states can cause sfn, diabetes being the most common and most studied. Autoimmune disease and chemical and viral or infectious exposures can too.

Symptoms can improve both by treating the actual symptoms, as he suggested, but also by properly diagnosing and treating the primary cause.

I hope that helps make more sense of it for you.

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I can relate with your frustration.

POTS is just a label for a collection of symptoms. Finding the cause can be elusive. Some of us never find out why. I know that mine is in the setting of small fiber neuropathy. Why do I have neuropathy? I do not know.

I hope that your appointment with the neurologist gives you more satisfying answers and information.

POTS can be considered primary if there is no known cause. POTS is secondary when what is causing the POTS is identified.

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Take hope EMartins. I found that my neurologist at the CC is the one that is more involved in (as others have stated) trying to figure it all out. The autonomic testing helps them steer their own tests regarding the search for a cause. Having both docs involved kinda forms a big picture. They may also suggest other types of docs as well depending on your symptoms. For instance, I have a GI doc helping with my chronic nausea. Take it one step at a time. I wish you well on your journey and keep us posted! This is a great place for information and support.

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