Uk Gp Coding For Idiopathic Dysautonomia....

[m@t]

Any of you other UK based peops know what your GP has coded you as on their system?

Both a cardiologist and neurologist have written to the GP and said I have idopathic dysautonomia which fits all of my symptoms although does not explain them.

Sadly the GP says there is no code for this on their system (based on SNOMED codes I believe) so is using a coding of "fatigue symptoms"! The problem with this is from experience anyone glancing at the notes sees that and reads it as time waster / somatiser.

[SarahA33]

Matt, this is from DINET's main page explaining An Overview of POTS that you might want to share with your GP: http://www.dinet.org/index.php/information-resources/pots-place/pots-overview I'm from the US, so I'll try some googling to see if I can be of any help. Hopefully, some of our UK friends will come to the rescue!

"POTS can be categorized as primary, meaning it is idiopathic and not associated with other diseases, or secondary, meaning it is associated with a known disease or disorder (Grubb, Kanjwal & Kosinski, 2006). Physicians believe there are distinct subtypes within both the primary and secondary forms, however the subtypes are still in the process of being identified, labeled and universally accepted. Regardless of type, POTS is not contagious.

People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). Some people have had POTS their entire lives. Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006).

The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabledand unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.

It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007).

POTS patients tend to be between the ages of 15 and 50 (Grubb & McMann, 2001, p. 65). Women are 5 times more likely to develop POTS than men (Grubb & McMann, 2001, p. 65). POTS does run in some families. The onset can be sudden or gradual. The quantity and severity of symptoms varies from day to day.

There are treatments for POTS symptoms which can be tailored to each individual patient, especially if an underlying cause is discovered. Researchers are attempting to identify and treat the mechanisms and causes of POTS. Studies show that most patients will eventually be able to stand up with fewer symptoms (Low, 2000). Most people with POTS can look forward to experiencing improvement with proper treatment."

[m@t]

Thanks for the reply sarah, POTS isnt my primary concern. Granted I do get the change in HR on standing but am fairly asymptomatic from it. The main issue that I have is my left pupil will dialate in certain circumstances and my blood pressure with become elevated and wildly different between arms. The pupilary changes can be quite startling!