Sep 25, 2012

Autoimmune basis for POTS - new research from Mayo Clinic!

New research out of Mayo Clinic shows autoimmunity in POTS patients:

Autoimmunoreactive IgGs from patients with postural orthostatic tachycardia syndrome.

Mayo Clinic has hinted in several of its prior POTS related publications that POTS may have an autoimmune basis.  I believe this is the first study that directly investigated this subject.  This is very exciting news.

As a patient advocate, I have spoken with literally thousands of POTS patients about their symptoms.  While I'm not a doctor, I have noticed that the vast majority of them have autoimmune tendencies.  I have POTS as the result of a confirmed autoimmune disease.  I know many, many other POTS patients who have confirmed autoimmune diseases too - Sjogren's, Lupus, Rheumatoid Arthritis, Scleroderma, Celiac, Hashimoto's Thyroiditis, Myasthenia Gravis and more.

When I hear patients describing frequent rashes, skin changes, Raynaud's, symptoms of small fiber neuropathy, sensitivities to gluten, or a family history of other autoimmune conditions, that sets of alarm bells in my head.  THIS PERSON PROBABLY HAS AN UNDIAGNOSED AUTOIMMUNE DISEASE!  Of course, telling a fellow patient that doesn't really help them, and it could scare them for no reason, since I can't know for sure.  I usually encourage them to see a good neurologist and a rheumatologist, if possible.

I eagerly await additional research from Mayo Clinic on autoimmunity in POTS patients.  If anyone at Mayo is reading this, or any other interested researchers, I really want to see a trial of IVIG therapy on POTS patients with confirmed autonomic neuropathy and a suspicion of autoimmunity.

Since I started IVIG one year ago, I went from being bedridden to almost normal on my activity level.  I had a mild dilated left ventricle cardiomyopathy.  After a year of IVIG, it is not showing up on my cardiac MRIs or echos, so it seems to have resolved.  I just had my one year repeat skin biopsies, and I would bet good money that my sudomotor and sensory small fiber density has improved.