icesktr189 Posted September 30, 2011 Report Share Posted September 30, 2011 Looking for yet ANOTHER cardiologist. I did really like this one I saw today, except he started to just write off my symptoms. I brought up today hydration therapy because my mom has a PICC line and she can drive and do stuff because of it. He told me that was a very invasive procedure and that there would be no need for it. I told him that it might help me out so I could drive again. Well then he said that there should be no reason I shouldnt be able to drive because I am not passing out everyday...Seriously, do they all just think that because we dont pass out everyday or at all, that we dont have pre syncope symptoms? I still have constant dizziness, vertigo, and hotheadedness. I remember the last day I drove last year that my fatigue got so bad I was shaking and my eye lids just started to close, even with me straining to keep them open. I just dont understand how they can just downplay everything. I really wish they could live in our shoes for just one day.I wish I could get into Mayo, but my insurance wont cover it and until I actually get disability one day, and am out of luck. Anyone know of decent doctors in the Phoenix area? I swear I have been to TONS. I just want one who takes me seriously! I mean how can you win a disability case when your own doctors dont believe you? Thankfully they wrote on my behalf and filled out questions, but i think they just did it to shut me up. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 1, 2011 Report Share Posted October 1, 2011 It is so frustrating and demoralizing to have the "experts" discount your experience. I can't count the number of times I have been told I was overreacting, or that I was being emotional. If I didn't have validation from my team (doctors assembled over time and painful experience) I don't know what I would do! I just got hustled out of the hospital on Monday, to my PCP's fury given that my vitals are in the toilet and I had lost 10 pounds in 10 days. The hospitalist actually told me to my face that I was keeping someone who was "really sick" from getting a bed. So our latest plan of attack is to treat me at home as if I were in the hospital. I have the advantage of having a port, home healthcare, and a really supportive fiance.As for saline therapy, unless you have kidney issues, why is he so against it? My docs love it because of all of the therapies I am on it has the least negative effect, and doesn't interact poorly with other meds. It is one of the few things I take that actually makes a big difference. I wish you luck! I am on the other side of the country, so not much help with doctors, but I think potsgirl is from Arizona.Sandy Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted October 1, 2011 Author Report Share Posted October 1, 2011 thank you sandy!! I just dont know why he totally ignore my request for one. I could tell he was in a huge hurry and didnt really care. you should have seen his face when I asked, it was total disbelief. then he just says, well your not passing out as much, so I think your doing good. I wanted to rip his head off. what I would give to have all our doctos live in our.shoes for one day! they wouls be absolutely shocked. I could see him not wanting to so a port if I was a newbie to this, not having tried meds, but I have tried them all and ths has been going on for four years .well its time to start searching again! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted October 1, 2011 Author Report Share Posted October 1, 2011 that is ridiculous a hospital would do that to you! I would file a complaint. ugh some people just sicken me! Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 1, 2011 Report Share Posted October 1, 2011 I saw my PCP yesterday, and she plans to make sure that doctor knows EXACTLY how displeased she is! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 1, 2011 Report Share Posted October 1, 2011 Sandy, do you know why you lost 10 lbs. in 10 days?! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 1, 2011 Report Share Posted October 1, 2011 Hi Dani,I see Dr. Goodman at Mayo Scottsdale, which doesn't help you right now, but I also see someone here in Tucson that works with POTS patients and who I think is good. My cardiologist is Dr. Ewy, pronounced 'a-v,' or I see his assistant, Connie Doner. They're with the Sarver Heart Center at University Medical Center, and work with about 10 patients who have POTS. Connie was great in writing up my symptoms/diagnosis for my disability, so you may want to take a drive to Tucson to see them. If you try to make an appt with Dr. E and you can't get in, ask for Connie. She'll see you first, then get you in to Dr. E, who is the head of the heart center, especially if she's really concerned about your symptoms.PM me for a phone number of more info if you're interested. I also have a great internist who works within the same system. Hope you're feeling better soon, and perhaps if you come down here to try out those doctors we can meet for coffee/tea! Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 2, 2011 Report Share Posted October 2, 2011 Hi Dani! I know what you mean about the doctors dismissing the driving safety issues. I finally told my PCP last fall when things got bad that he was as safe driving next to me as he was driving next to someone who drank a fifth of vodka. He looked at me like I was crazy but I told him again how my vision blurs, and the dizziness starts, and I feel like I'm driving in a Salvador Dali painting...you know, all warped and distorted and slow like I'm melting mentally. He didn't get it until I showed him how close to being drunk it is. He finally got it but you would think doctors would be more concerned/understanding when someone tells them they have severe presyncopal episodes. I hope you find a doc that takes you seriously. Good luck in your search. Quote Link to comment Share on other sites More sharing options...
songcanary Posted October 2, 2011 Report Share Posted October 2, 2011 Katybug,That is a great description. I have felt the same way but never said it like you did. Dani, I hope you feel better soon Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted October 2, 2011 Author Report Share Posted October 2, 2011 Thank you!!Potsgirl If you could pm me I would love to see that doctor! Tuscon is only a hour and a half drive away so it would not be a big deal! Thanks!!Actually, the last time I drove I was on the freeway and I could feel myself starting to pass out. I was in the very left lane (5 lanes over) and started just racing to make it to one of the exits. I almost hit three cars and it scared me so bad. The problem is that I never know when that will happen in the car, even sitting down. I dont know why doctors dont think we cant pass out sitting. I actually have passed out the most sitting down because usually I am forced to stay in that position. At least when I am standing, I move around. Also I get adrenaline rushes so bad when someone honks their horn and pulls in front of me. I just cant believe a doctor would tell me its okay. What happened if I killed someone or myself on the road?! That is very irresponsible of them, and thankfully I know better than that. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 2, 2011 Report Share Posted October 2, 2011 I lost the weight so fast because of a celiac reaction. My fiance and I went out to dinner, and despite stressing how very important it was to make my food separately to avoid the risk of cross contamination. Thus far I have managed to regain about 4 pounds. (I am 5'8, and currently 134 pounds, so still about 6 pounds under the minimum my doctor likes to see me at.) Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted October 2, 2011 Author Report Share Posted October 2, 2011 am I underweight? I am 5 10 and 124 pounds. I eat quite a bit though Quote Link to comment Share on other sites More sharing options...
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