Day 3: How did you get diagnosed?
Diagnosis of POTS can be a long, difficult process. Many people end up seeing a large numbers of physicians, over a large amount of time before getting diagnosed with POTS. As you can see in the charts below 27% of patients see 10 or more physicians before diagnosis, and the average length of time between onset of symptoms and is nearly 6 years.
Locally I saw my PCP, a neurologist, a cardiologist, an internist, a ENT, countless physicians at the local hispital, and had an endless number of tests (a first tilt table, various CT scans, MRIs, ultrasounds, a echo, blood tests, heart monitors that I work first for 48 hours and then for 30 days, a in office EEG and an EEG I wore for 72 hours, and probably others I’m forgetting) before my PCP sent me to the syncope clinic at the Cleveland Clinic. There I had a battery of tests then ultimately lead to the diagnosis of POTS. These tests include a second tilt table test (the first one was done at my local hospital, and was ultimately positive for POTS, but the local physicians didn’t know what they were looking for so deemed it negative), a QSART (a test that looks for small fiber neuropathy), hemodynamic blood tests (look at what the blood does when I change positions – mine showed severe decrease in blood cells and plasma due to blood pooling) and additional testing to look at how my body responds to various stressorsI was fortunate compared to others, as it only took 7 months between the onset of symptoms and a diagnosis. Since developing the eating issues I’ve also had various other tests including a gastric emptying study that looks at how long it takes your stomach to empty food, multiple ultrasounds of my stomach, blood tests, several CT and CT angiograms, a scan HIDA scan that looks at how your gall bladder functions, various blood tests, and so on.
Since getting sick I have gotten progressively worse, but ultimately I feel very fortunate that it took such a short period of time for me to get my diagnosis, and fortunate to have a wonderful team of physicians who have worked hard to help me.
Thanks for taking the time to read my post. Hope everyone has a good day!