lgtaylor100 Posted July 12, 2011 Report Share Posted July 12, 2011 Like most of you, I have been searching for the cause of my dysautonomia. My primary doctor thinks that it is likely autoimmune. I began this journey by visiting a rheumotologist even before I was diagnosed with POTS. Although I had the signs and symptoms of Sjogren's (dry mouth, dry eyes, dry everything)with the exception of a positive ANA the rest of the lab studies were negative. I went to a doctor at the University of Pennsylvania who also was not sure if I had Sjogren's. He indicated that all of my symptoms may be attributable to dysautonomia and said that dysautonomia could be idiopathic. Has anyone else ever heard that dysautonomia could be idiopathic? We try so hard to find the cause and maybe it just is. What have you heard on this subject?Lynne Quote Link to comment Share on other sites More sharing options...
yuliya Posted July 12, 2011 Report Share Posted July 12, 2011 maybe "idiopathic" to them is "we just don't know yet". Doctors are finding new diseases every year. Just because they don't know now doesn't mean it really is idiopathic. I hope you understand what I am saying. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 12, 2011 Report Share Posted July 12, 2011 Wow I could not agree with this more! My thoughts exactly.maybe "idiopathic" to them is "we just don't know yet". Doctors are finding new diseases every year. Just because they don't know now doesn't mean it really is idiopathic. I hope you understand what I am saying. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted July 13, 2011 Report Share Posted July 13, 2011 Yes, my official diagnosis after all the testing at Vanderbilt is idiopathic Autonomic Neuropathy. When I was diagnosed with idiopathetic gastroparesis about 7 years ago, I volunteered to undergo a biopsy of my stomach lining for a research study my GI was doing concerning causes of GP. My results: idiopathic gastroparesis. So I guess you can call me Ms. Idiopathic Everything! Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 13, 2011 Report Share Posted July 13, 2011 I believe the neuro at CC I saw said that about 80% of the patients with autonomic neuropathy had an "idiopathic" cause...meaning they have a LONG way to go to get this all figured out. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 13, 2011 Report Share Posted July 13, 2011 Yes, my official diagnosis after all the testing at Vanderbilt is idiopathic Autonomic Neuropathy. When I was diagnosed with idiopathetic gastroparesis about 7 years ago, I volunteered to undergo a biopsy of my stomach lining for a research study my GI was doing concerning causes of GP. My results: idiopathic gastroparesis. So I guess you can call me Ms. Idiopathic Everything!I'm no doctor.......but. I'd say autonomic neuropathy can most definitely cause gastropariesis, your autonomic nervous system controls the smooth muscles of your digestive tract. That neuropathy can cause your stomach muscle not to grind and work properly. I think too many times when a doctors doesn't know alot about what's going on, it's either idiopathic, or the patient is making it up. Sorry just my two cents. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted July 13, 2011 Report Share Posted July 13, 2011 Definitely! My doctors now believe that most, if not all, of my debilitating disorders are due to autonomic neuropathy, beginning with Chronic Fatigue 17 years ago, followed by gastroparesis, then dysautonomia and POTS, and now this idiopathic moderate/severe epigastric pain that is triggered by liquids. I'm just waiting to see what else autonomic neuropathy blesses me with! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 14, 2011 Report Share Posted July 14, 2011 Nearly all POTS is currently idiopathic. It could be primarily idiopathic autoimmune, neuroopathic or vascular in origins. High flow POTS - autoimmune / neuropathicNormal Flow POTS - faulty nitrergic nerve function potentiallyLow Flow POTS - elevated angiotensin II, NET potentially, beta1 receptor hypersensitivity, other nitric oxide competitors,etc. Quote Link to comment Share on other sites More sharing options...
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