kclynn Posted January 21, 2011 Report Share Posted January 21, 2011 I know a lot of people travel for diagnosis but then try to work with thier local physician because it can be difficult to manage symptoms long distance. Does this work for you? Do you see a GP or some other specialist? My son's pediatrition doesn't always respond and he as he is almost 16 I am thinking of making a change. My friends daughter (she has juvenile arthritis) sees a Dr. who is an internist and a reumatologist, and has an interest in, lupus, pain mgmt and fibromyalgia. Would you think a Dr. like this might do well with autonomic disorders? Quote Link to comment Share on other sites More sharing options...
yuliya Posted January 21, 2011 Report Share Posted January 21, 2011 I have a primary, but was diagnosed by a cardiologist who is also an internist. I had to ask him for all the test and he blew me off at first and said it was anxiety, but now he believes me and glad he did the tests. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 22, 2011 Report Share Posted January 22, 2011 Before finding the local autonomic specialist, no local doctors helped. We traveled to Cleveland 5 times last year and would continue to do so if we hadn't found the local doctor. Our pediatrician just deferred all treatment to Cleveland and didn't take an interest in helping locally. I guess we could have tried to find a pediatrician to help but we just kept up treatment through Cleveland. I was able to email them with questions and updates anytime and they responded within 24 hours.Christy Quote Link to comment Share on other sites More sharing options...
Will_I_am Posted January 22, 2011 Report Share Posted January 22, 2011 My Neurologist started some blood tests which came back negative on ANA and some positive ANA 1:320 titer for lupus and connective tissue disease. I was then referred to a Rheumatologist who then oredered his own testing and everything came back negative. I was told I didn't have any of his diseases and he had nothing else to offer me. In 5+ yrs I have had Doctors scratch their head with no idea what was causing my symptoms except maybe Anxiety and Hypertension. Even though my blood pressure would drop below normal. One GP said he needed help and did not know how to get my bp in control. I see a Cardiologist who specializes in Dysautonomia now and I am hoping he figures out what is causing my symptoms...if interested in my symptoms you can read my post Dysautonomia? POTS? or what? I hope that in knowing what the diagnosis is maybe they can help if aware, but I'm afraid most Doctors have a quota and unless specializing in that specific disorder may not want to take the time to figure out how to treat you. There are few who don't overbook and try to get as many in and out as possible....that I have seen. Good luck,Best wishes, and I hope he/she is one of the exceptional doctors who really takes the time and attention to treat your son.. Quote Link to comment Share on other sites More sharing options...
mwise Posted January 22, 2011 Report Share Posted January 22, 2011 I would suggest you find someone who specializes in dysautonomia. My family physician is a relative and he definitely recommended me to follow with someone who specializes in the field. I am driven (I live almost 2 hours away) to Cleveland Clinic to follow up with Neurologists who specialize in this area. I found them empathic and very knowledgeable. If a problem arises, they call me back within 24 hours. They also send me reports of my visits with them for my records and also send a copy to my family physician to keep him updated. Good luck finding the right physician. Quote Link to comment Share on other sites More sharing options...
Brye Posted January 22, 2011 Report Share Posted January 22, 2011 I see an internal med doctor. He has been great. He started the compression stocking and high salt diet before even knew POTS was the diagnosis. He's been very helpful and supportive. I see a cardiologist from afar and my internal med doctor for the in between problems.Brye Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted January 22, 2011 Report Share Posted January 22, 2011 Integrative docs have been the only good doctors for me. Quote Link to comment Share on other sites More sharing options...
kclynn Posted January 22, 2011 Author Report Share Posted January 22, 2011 Before finding the local autonomic specialist, no local doctors helped. We traveled to Cleveland 5 times last year and would continue to do so if we hadn't found the local doctor. Our pediatrician just deferred all treatment to Cleveland and didn't take an interest in helping locally. I guess we could have tried to find a pediatrician to help but we just kept up treatment through Cleveland. I was able to email them with questions and updates anytime and they responded within 24 hours.ChristyHi Christy,It would just be so great to not have to drive 8 hours. It is hard on him and hard on all of us. With my daughter we have to decide if she will stay home with friends (no relatives here) or come with us. My husband has to take off work and of course the expense.... Don't get me wrong, all worth it if we get the right direction but I am not nessasarily happy with where he was diagnosed. Some say we should go to Ohio but that is a 2 day drive or expensive flights, and not at all sure he could even handle flying. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 22, 2011 Report Share Posted January 22, 2011 I see an integrative doc too. She's ordering tests that are actually helping me. Including which foods I'm intolerant of and nutritional and hormone deficiencies. Quote Link to comment Share on other sites More sharing options...
kclynn Posted January 22, 2011 Author Report Share Posted January 22, 2011 We have always liked my son's current Dr. but I feel like we have worn her out. She doesn't get back to me and answer my questions always (when I email). I can force some answers by phone but I think she hasn't really interested in spending much more time on us. She is really busy. I am wondering just how you go about it. I really, really hate the idea of dragging my son to more Dr. who may not be a good fit for us (or be down right rude or have attitude about his condition). I know that happens for a lot of people and that makes you feel bad but it is the worst for a 15 year old. Should I ask for their nurses and quiz them on the Dr. being interested in a patient with POTS? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 23, 2011 Report Share Posted January 23, 2011 Before finding the local autonomic specialist, no local doctors helped. We traveled to Cleveland 5 times last year and would continue to do so if we hadn't found the local doctor. Our pediatrician just deferred all treatment to Cleveland and didn't take an interest in helping locally. I guess we could have tried to find a pediatrician to help but we just kept up treatment through Cleveland. I was able to email them with questions and updates anytime and they responded within 24 hours.ChristyHi Christy,It would just be so great to not have to drive 8 hours. It is hard on him and hard on all of us. With my daughter we have to decide if she will stay home with friends (no relatives here) or come with us. My husband has to take off work and of course the expense.... Don't get me wrong, all worth it if we get the right direction but I am not nessasarily happy with where he was diagnosed. Some say we should go to Ohio but that is a 2 day drive or expensive flights, and not at all sure he could even handle flying.I know how you feel. Cleveland was a 9 1/2 hour drive for us. My husband went 2 times, and then we found it easier for him to stay home and not miss work and also be home with our daughter(it was actually a pleasant drive). Have you thought about the doctor we are using here is ST Louis? I can give you his email, that is how I originally contacted him. I told him the situation, and he agreed to see Cody even though he usually doesn't see patients under 18. I got a copy of all of the tests that were done and brought them to him at our first visit. As I said before, he used to work with our Cleveland doctors. When I scheduled the appt, the scheduler didn't want to make the appt, but I told her the doctor agreed through email to see us. Quote Link to comment Share on other sites More sharing options...
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