Jul 22, 2012

New Mayo Clinic Research on POTS

Check out the new Mayo Clinic study on POTS:

A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome

This is the first time someone has followed a cohort of POTS patients prospectively for a year to see if they improved.  Interestingly, their neuropathy and heart rate did not really improve, but their orthostatic intolerance seems to have improved somewhat.

Mayo notes that, just like in their prior 10 year retrospective study, about 50% of POTS patients in this study have a limited autonomic neuropathy.  The note that they study was designed to exclude individuals who had another known cause of autonomic failure.

I would be VERY interested to know what tests Mayo ran on these patients before ruling out other known causes of autonomic failure.  I want to know this, because I assume Mayo is doing an excellent job of ruling out known causes of autonomic neuropathy, so those are the tests that other POTS patients who have neuropathy should be asking their local neurologist for.  I am a firm believer that, if you have autonomic neuropathy, you should not accept a diagnosis of POTS until your neurologist has taken great care to rule out the known causes of autonomic neuropathy.

I hope Mayo follows this group of patients for more than a year.  We need a 10 to 20 year propsective study.  Do they all eventually recover?  Do they relapse after a period of wellness?  How do they fare during or after pregnancy?  Do any of them get worse?  Do any of them eventually get diagnosed with an underlying condition?  Does the autonomic neuropathy eventually improve?

I am thankful for the researchers at Mayo who have been involved in this study, and for the patients who were dedicated enough to return to Mayo for their 1 year follow up studies.