Poohbear Posted April 9, 2006 Report Share Posted April 9, 2006 Wanted to see what thoughts or input the rest of you have on this topic.I was first diagnosed with NCS many many years ago. In time I got worse (different symptoms) and they then added POTS to the mix. They've also been able to determine (although it's taken years to actually catch enough data on EKG's and monitors) that I do have true intrinsic IST as well.For many of these years I've dealt with cardiologists. Both Vandy and Dr. Grubb come from cardiology backgrounds. In time as I've learned more and seen how dysfunctional my entire body is I wonder......are these guys still missing something? It's not my intention to put them down and I don't want to sound that way. I've been helped in so many ways by these guys.POTS= Postural orthostatic tachycardia syndrome. Even the name implies more of a cardiac problem. In fact my local cardiologist says the disorder is a cardiovascular one. I think since it involves the autonomic nervous system that it is equally a neurological problem yet the neurologist say "no" to that (although I don't understand why).I understand the cardiac components of this disorder may appear, or even may be to some, the most debilitating and dangerous symptoms.Personally, I wonder if at least for some of us, if we aren't misdiagnosed again. I definately have the symptoms of POTS and NCS however, I also have symptoms of a much bigger and broader problem that are not helped by any of the meds used to treat POTS. I have debilitating symptoms that effect almost every major body function I have. To me, that adds up to something that is really much more complex than only POTS as they've defined it to date.What do you all think? Quote Link to comment Share on other sites More sharing options...
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