Hi GMDTS,
Well at least you made me laugh! . . .but you’re so right in what you are saying. Is there an overall ‘medical governing body’ (or medical Ombudsman) in the USA? Both these bodies need to be made aware of this large number of the population, with this condition, who are not getting fairly treated (and oftentimes mis-treated!) – doesn’t that breach some convention or other ? Surely doctors/consultants need to ‘keep up’ with medical progress. this condition has been around certainly since the 1980’s and before, that’s over 30 years, yet recognition & treatment is still in the dark ages, if there at all!!
Whatever governing body is in charge of teaching ‘up and coming’ doctors, needs to incorporate how to recognise the various ‘signs’ (physical anomalies) that can occur in our condition (good grief, I have made a list of many of these – so surely one of them could have done so!!)
For instance, the Cardiologists should be looking at the heart structure, heart function & circulation for the following signs:-
1. Left Ventricular Diastolic Dysfunction
(according to Dr Cheney there is compensatory dilation of left atrium therefore a large or larger atrium is often found)
2. Low Stroke Volume (SV) due to poor mitochondrial function causing poor filling (not necessarily hypovolemia)
. . . here’s the equation (SV=PPx2) PP stands for Pulse Pressure (Systolic – Diastolic = Pulse Pressure).
3. Innappropriate Cardiac Output (CO) for POSITION
. . . here’s the equation (CO=HRxSV) HR stands for Heartrate.
4. Mitral Valve weakness
5. Aortic Stenosis
Tests required are:-
a) Echocardiagram
b) Specific BP/HR Studies –
laying(flat;left;right);sitting;standing;all fours;(right/left arms/legs)
c) 7 day holter monitor (24 hours doesn’t always capture this conditions essence)
d) Tilt Test
e) Exercise Test
. . . . . . but what is our condition ? It doesn’t help that our overall condition does not have a name, it is in fact a combination of several sub-conditions (EDS, POTS, CFS, etc) that appear to occur together.
Regards
Barbara
(UK)