gjensen Posted January 5, 2014 Report Share Posted January 5, 2014 I lost a significant amount of weight and muscle tone. I was able to gain a third of my weight back. I have been making some nutrient dense shakes, and counting calories. I put a lot of effort into getting some weight back on. I still have a ways to go, but I am making progress. From my experience, the best I could say is find a doctor familiar with this, or you might run into more dead ends. I thought I was doing the right things and getting to the right people, but I was wrong. 9 months into this, I am still floundering around. Do not take no for an answer. You will have to be your own advocate. I have been in front of a lot of doctors around here. I received a variety of reactions. I promise this much, they will not forget me. Another is that if someone is unfortunate enough to come behind me, they will get off on the right foot sooner. Look through the doctor's list on here, and if you see that someone is in your area . . . ask questions about who they have seen. Quote Link to comment Share on other sites More sharing options...
tanner Posted January 5, 2014 Author Report Share Posted January 5, 2014 Thanks you I actually checked out the doctors on the dinet website and emailed a few of them that are in my area in Ontario. No replies yet:(. All my results were normal unfortunately from my colonoscopy/gadtroscopy. I just want to find something fixable for my symptoms and how im feeling. I want my life back. What causes the weight loss and chest discomfort with this condition. I was so stressed I went to the local clinic to get an ecg yesterday. The clinic doctor referred me to an internist in our city since we dont have a cardiologist here. Perhaps he can refer me to a cardiologist in Ottawa. A Cardiologist is the best to see isn't it or is it a neurologist?ThanksLaura Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 5, 2014 Report Share Posted January 5, 2014 I've heard various theories about the chest pain varying from it being related to diastolic dysfunction and hyperdynamic ejection fractions to it being related to changes in the microvascular circulation in the heart to it being related to costochondritis.Haven't heard any good explanation for the weight loss.I think the best doc to see is one who has experience with POTS/dysautonomia. Some of us see a neuro and some see a cardio for that reason. I see a local cardio who knows a little bit about it (now) but the specialist I travel to see is a neuro. Quote Link to comment Share on other sites More sharing options...
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