icesktr189 Posted January 19, 2010 Report Share Posted January 19, 2010 So i saw my cardiologist and he is frustrated with me because i am pregnant. So basically he cant do anything for me till the baby is born, but he is handing me off to a neurologist. he gave me a referral to one, but i dont see the point. i have had POTS for 3 years and never have gone to one. mainly because i managed my symptoms by myself up till now when they are horrible. what do i say to the neurologist? i really dont know what they can do for me.. let alone if they can do any tests while i am pregnant. i do know i have an open spine on the inside of my lower back. so basically when he sees me, what do i say to him? " hi i have POTS, please help me?" haha. i really hope they know what it even is in the first place! Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 19, 2010 Report Share Posted January 19, 2010 Hi, before you go to the neurologist, you may be interested in asking the secretary if the doctor has any patients with NCS or orthostatic intolerance so you'll know if he can be of any assistance with your POTS. Also, no matter what physician you go to, you won't be able to do anything about it anyway because of your pregnancy, I suppose.Maybe some other POTsies on this forum, who have gone through pregnancy can help you? Quote Link to comment Share on other sites More sharing options...
potsgirl Posted January 19, 2010 Report Share Posted January 19, 2010 A lot of people see a neurologist for dysautonomia, along with a cardiologist. You may be surprised. My autonomic specialist at the Mayo Clinic in Rochester was a neurologist, and he ran several tests, including a sweat test. My cardio and my neuro work together, because I also have heart disease and a pacer. Neuro's will/can/do work with the central nervous system. Cheers and congrats,Jana Quote Link to comment Share on other sites More sharing options...
DYSarray Posted January 20, 2010 Report Share Posted January 20, 2010 My neurologist is the only doctor that keeps me relatively functional. He his highly skilled in managing not only my OH/OI issues but also addresses all other symptoms caused by my dysautonomia and if it is something that can be better handled by a different specialist he sets me up with the doc that will best suit my needs. In my case, my dysautonomia is progressive and the neuro works extremely hard to give me the best quality of life possible. I struggled for a very long time with a lot of different types of doctors who really didn't understand what to do with a patient with an autonomic problem. Even the cardiologists didn't come close to helping me the way that the neurologist has. So don't rule out the fact that the right neurologist could possibly change your life.He also goes to bat for me with other specialists who "don't get" the dysautonomia thing. Some doctors really don't want to treat a patient with autonomic issues and tend to pass the buck but my neurologist calls other doctors, answers their questions, and helps them understand how they can help me...As far as I am concerned he is worth his weight in gold.With that being said.......I also have had a whole bunch of really crappy neurologists but it was worth the effort to find the right one...I am in a much better state than I have been in a long time...I don't feel broken anymore. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 20, 2010 Author Report Share Posted January 20, 2010 thats really great! i just feel super low because I have been let down by so many doctors and i just feel that this is going to be another one. i was just upset with my cardio because i felt like i was being "handed off", like he doesnt want to deal with me anymore. he really is a good doctor, but i think he just doesnt know what to do anymore with me. im just so frustrated being this pregnancy has been awful with my POTS symptoms and especially this third trimester. even if this neuro is good, i doubt he can do anything right now so im kinda reluctant to go. i wasnt trying to say seeing a neurologist was a dumb idea, i just think for me right now its going to be Quote Link to comment Share on other sites More sharing options...
lifesaver Posted January 21, 2010 Report Share Posted January 21, 2010 Dani,My neuro specializes in dysautonomia and he more than understood the years and multiple doctors it took to get a diagnosis. I will be seeing him, not a cardiologist, at least for now, for all my treatment. He laid out a very good treatment plan today and really gave me hope that my symptoms can be treated and not be as bad as they are now. I suggest you check and find the neuro in your area with the most experience treating POTS patients and ask to be referred to that doctor. Call their office and talk to them too. Best wishes for the pregnancy and finding good care. When a doctor gives up like that, it is not you, the doctor's ability to treat you has reached an end. Becky Quote Link to comment Share on other sites More sharing options...
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