Silly Question

[jump]

When I was diagnosed, my doctor just kept calling this by its long name (postural orthostatic tachycardia syndrome) and talked about autonomic dysfunction. As a result, I've only ever seen POTS and OI and NCS written down.

Do people say POTS as if it's a word (like rhymes with spots?) Or are you supposed to say it P-O-T-S like initials?

Same thing with NCS and OI - are those just shorthands used on this website, or if I said N-C-S to a doctor (like initials) would they know what I was talking about?

I know this is a silly question, but I'm gearing up to call some new doctors and I don't want to sound silly! And saying postural orthostatic tachycardia syndrome is such a mouthful....

[lloppyllama]

POTS like it rhymes with spots.

N-C-S, they should know what you're talking about if, but they might not if they dont even know what its long name is, but if they know the long, then I can say pretty confidently they would know the short, and for OI I usually just say orthostatic intolerance.

[Ernie]

Hi,

I start with the abbreviation and of course they don't know what it means so they I say the long name, spell it out and give them a crash course!

[ajw4790]

Hi,

I agree. Also, there is a diagnosis abbreviated POTTS, so if they are unaware of POTS, they may think you are talking about POTTS. (Just an FYI)

[flop]

I pronounce the abbreviations just like the initials for NCS but say "Pots" (like cooking pots!).

The problem with abbreviations in medicine is that they can mean totally different things to different doctors. For example is IVC an "Intra-Venous Cannula" or the "Inferior Vena Cava"?

When writing any sort academic document the accepted way to deal with abbreviations is to write it out in full the first time with the abbreviation in brackets afterwards and after that just use the abbreviation. For example:

I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in 2005. The symptoms that POTS causes are dizziness....."

I take the same approach when talking to doctors - say it in full the first time then shorten it. For NCS I usually just say "syncope".

POTS vs Pott's Disease. Pott's Disease was named after Dr Percival Pott an 18th centuary English physician. It is tuberculus (TB) infection of the spine - very different to POTS! (Note Pott's should always be called "Pott's Disease" where as the S in out POTS stands for syndrome but often gets called POTS Syndrome).

I hope I haven't totally befuddled everyone!

Flop

[Sophia3]

I just say autonomic dysfunction to new docs...or Dysatuonomia ( diss auto NO mee a) And say it's posture and gravity related causing Tachycardia.

My ANS doc has it noted as autonomic dysfunction in his notes. Only Dr. G called it POTS.

[Megan]

I say POTS like it's a word. I usually have to say it all out, though, as doctors get confused and people often think I am talking about marijuana, which is definitely not the case.

Meg

[ajw4790]

Hadn't thought much about the marijuana link...!

[Rachel]

If the doctor is familiar with dysautonomia, you can just say, "POTS". Otherwise a brief (or detailed if they want it!) explanation is needed.

If I'm in the office of a new doctor who isn't familiar with dysautonomia, I usually say something like, "I have dysautonomia, which is a dysfunction of the autonomic nervous system. The specific types of dysautonomia I've been diagnosed with are POTS, which stands for Postural Orthostatic Tachycardia Syndrome, and NCS, which stands for Neurocardiogenic Syncope. Basically nothing in my body is regulated properly, including heart rate, blood pressure, temperature, digestion, energy production, sleep, and much more. The specialists believe the root cause of my dysautonomia is" blad-de-blah-de-blah. You get the idea. I then go over whatever specific symptom(s) brought me to his office.

If you are speaking on the phone with a receptionist, then you may find that she isn't as familiar with dysautonomia and dysautonomia terms if the doctor doesn't have many (or any) dysautonomia patients. So if you are making an appointment sometimes a very simple explanation is needed so that the receptionist knows that you have called the right doctor. For example, if you are making an appointment with a cardiologist, you could say, "I have POTS. That means that my heartrate goes way too high when I stand up." If you are making an appointment with a neurologist you could say, "I have POTS, which is a dysfunction of the autonomic nervous system."

If I am speaking with someone in the medical field who doesn't need to know a lot of my health details (like a dentist, or a nurse who is drawing blood) I usually just say something like, "I have autonomic nervous system dysfunction that has become pretty severe. It leaves me very tired and weak and unable to stand for more than a few minutes" Usually they are just asking because I look so healthy and they are wondering why I'm in a wheelchair.

That was probably way more of an answer than you were needing. Oh well.

I hope the phone calls go well and that you can find a good doctor.

Rachel