bttrflyamby1981 Posted April 19, 2006 Report Share Posted April 19, 2006 Hi everyone,Just wondering if anyone knew what the chance is that I don't have POTS? If the doctors tell you they think you have it but you haven't been dx, then what happens? Have some of you waited years for the dx but knew you had it? My husband cautions me not to get my hopes up. Not to rely so much on this forum. He asks me what I'll do if the doctors find that it's something else and not POTS? I don't know how to answer that question. I have found comfort in all of you and I would hate to lose that. So what do you do? I just want answers. I think of myself as having POTS but maybe I shouldn't. I just don't know what else it could be? I feel like a lab rat and the sad part is that they don't know a whole lot more then they did in the begining. The only thing they have found is the high heart rate? And that took 3 hoilter moniters. They do know that my heart is healthy so I should be thankful for that. Do they really have to draw blood every visit? ( I hate needles and I don't want to get poked anymore ) I know I have to anyway but I don't have to like it. I'm sorry for all my moaning, just feeling lost and alone. I know I'm not but I can't shake the feeling.Thanks, Amber Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 19, 2006 Report Share Posted April 19, 2006 Hi,I would go ahead with the testing that the doctor suggested and wait for his diagnosis. You are not a statistic and every case is different.You can also have a look at the following links which will answer many of your questions:http://dinet.ipbhost.com/index.php?showtopic=1954 Quote Link to comment Share on other sites More sharing options...
Guest sonotech Posted April 19, 2006 Report Share Posted April 19, 2006 I am not sure what all of your symptoms have been or what tests (besides the dreaded blood work) have been done, but I am sure your husband is just taking the cautious approch and has seen you get "let down" by many doctors before and doesn't want you to get emotionally disappointed AGAIN.How long have you been experiencing symptoms? And have you mentioned POTS to your docs?If they diagnose you with SOMETHING ELSE, then at least you will finally have the diagnosis that you have needed.I am also sure that no one here on this site would mind you still posting if you DON'T have POTS since many consider you a friend, so try and keep your head up and work hard to get that diagnosis!!Laura Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 19, 2006 Author Report Share Posted April 19, 2006 Thanks,The last time I seen the doctor, he was stumped as what to do next. I've been tested for everything!TTT, showed a negitive reading. CT scans, MRI, both normal. They tried the strees test (exercise), couldn't complete it because I almost passed out. The readings didn't pick anything up? I did the bubble study, again everything normal. They did the dobutamine stress test next, that too I couldn't finish. I thought I was going to die! I will never do that one again. Don't get me wrong, I'm ok with the tests being normal but I would really like to know what's wrong with me.The doctor is the one who told me it was POTS, but the TTT was negitive. He doesn't specialize in POTS and told me he's not sure what to do. He's done what he can for what he's familar with. Now that doctor is in the hospital and they don't know if he will continue to work if and when he recovers. I so hope he's ok.....I'm going to call and find out. I'll get back to you on the symptoms....I want to make sure I have them written down....too many to remember.Amber Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 19, 2006 Report Share Posted April 19, 2006 Amber,Were you off all of your medicines that could possibly affect the outcome of the TTT when you took the test? Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 19, 2006 Report Share Posted April 19, 2006 Hi,I would see a POTS specialist and have a repeat TTT without medication (if you had medication the first time). You can find a specialist on the Dinet list. Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 19, 2006 Author Report Share Posted April 19, 2006 I think I was off the meds for about two weeks. I can't remember for sure though.I think this is the same time they put the third hoilter moniter on. The Hoilter moniter showed helpfull info, but the TTT was negitive. I had the MRI around the same time frame.Can the test be wrong even if I wasn't on the meds for two weeks? Would that be long enough for the meds to wear off? These are my symptoms if anyone has an opinion or knows what other illness that can cause these symptoms I would be greatful.Tachycardia Bloating after meals (not all the time)Lightheadedness Congnitive impairmentDizziness Delayed gastric emptyingPalpaitiations IBSExercise intolerance Tunnel vision (but not bad) Blurred vision Sleep disordersChest discomfort/pain Numbness and tinglingClamminess Generalized weaknessNear fainting Aching neck and shouldersAnxiety Nausea, noise, and light sensitivityFlushing Easily over-stimulated Fatigue Feeling "weird"Migraines Irregular menstrualBlood pooling in limbs muscle achesIntolerance to heat PolydipsiaI might have more, but those are the ones that I'm sure on.When I write them down like this, I wonder how I go on day by day. I am living a pretty normal life, but I know if I had to get a real job, I couldn't do it.My kids suffer and I just wish I knew why I feel like this. I'm really clueless at this point.Thanks for you help and your support, if it comes down to me not having POTS, I feel that I can still relate on some level. AmberI think I was off the meds for about two weeks. I can't remember for sure though.I think this is the same time they put the third hoilter moniter on. The Hoilter moniter showed helpfull info, but the TTT was negitive. I had the MRI around the same time frame.Can the test be wrong even if I wasn't on the meds for two weeks? Would that be long enough for the meds to wear off? These are my symptoms if anyone has an opinion or knows what other illness that can cause these symptoms I would be greatful.Tachycardia Bloating after meals (not all the time)Lightheadedness Congnitive impairmentDizziness Delayed gastric emptyingPalpaitiations IBSExercise intolerance Tunnel vision (but not bad) Blurred vision Sleep disordersChest discomfort/pain Numbness and tinglingClamminess Generalized weaknessNear fainting Aching neck and shouldersAnxiety Nausea, noise, and light sensitivityFlushing Easily over-stimulated Fatigue Feeling "weird"Migraines Irregular menstrualBlood pooling in limbs muscle achesIntolerance to heat Polydipsiasorry everything got pushed together?I might have more, but those are the ones that I'm sure on.When I write them down like this, I wonder how I go on day by day. I am living a pretty normal life, but I know if I had to get a real job, I couldn't do it.My kids suffer and I just wish I knew why I feel like this. I'm really clueless at this point.Thanks for you help and your support, if it comes down to me not having POTS, I feel that I can still relate on some level. Amber Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 19, 2006 Report Share Posted April 19, 2006 Do you have a copy of your medical records and the results from the TTT? Did they use medication on you when they tilted you and what was the total length of time that you were tilted? OH and what meds were you on at the time of the tilt?Steph Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted April 19, 2006 Author Report Share Posted April 19, 2006 that didn't work either....man I'm really sorryNot having a good time with the computer Amber Quote Link to comment Share on other sites More sharing options...
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