katcanny Posted September 14, 2017 Report Share Posted September 14, 2017 Hi all!! I am currently seeing a pharmacologist specialising in POTS but have not had a lot of testing in regards to my heart or that I may have Reynauds due to symptoms. I was just wondering what specialists people have and who does different testing as my specialist is not being very helpful with looking into symptoms, he thinks I am doing fine but not being able to live a somewhat normal life, or about to lose my job due to being symptomatic and having to take weeks off at a time is not doing fine to me! Not to mention the impact it is having on my son and my relationships with my family and friends!!!! Thanks everyone!!! 🙏 Quote Link to comment Share on other sites More sharing options...
corina Posted September 14, 2017 Report Share Posted September 14, 2017 I started off with a cardiologist who recognized POTS and was send to a neurologist who did a TTT and other tests and diagnosed me officially. The neuro is my primair specialist but depending on the problem I see other specialist (endo, intern, cardio). Hope this helps! Quote Link to comment Share on other sites More sharing options...
yogini Posted September 17, 2017 Report Share Posted September 17, 2017 Hi, not sure where you are based, country/city? Generally a cardiologist or neurologist might know about dysautonmia. There is great info and also a doctor list on the DINET information page. Doctors who aren't on the list often don't know much about our condition.... Quote Link to comment Share on other sites More sharing options...
Ellenmd53 Posted September 21, 2017 Report Share Posted September 21, 2017 What made you see a rheumatologist, may I ask? What are your symptoms? How do they affect you at work and home? I'm new to all of this and am gathering as much information as I can. If you're uncomfortable responding here, send me a personal message. I'd welcome your feedback and input!! Thank you very much Ellen Quote Link to comment Share on other sites More sharing options...
Ellenmd53 Posted September 21, 2017 Report Share Posted September 21, 2017 **** autocorrect. It should say pharmacologist, not rheumatologist. Quote Link to comment Share on other sites More sharing options...
katcanny Posted September 22, 2017 Author Report Share Posted September 22, 2017 I was referred to him after I was diagnosed in hospital, he is a specialist in POTS but he is a pharmacologist so he is all about drugs and sometimes I feel like a guinea pig without the testing just the try this see what happens. He firmly believes that POTS is based on vein function and has nothing to do with the heart just the symptoms of course so I was wanting to try and get advice what other specialists I can get my gp to refer me to see that might be able to do testing to help me live a somewhat functional life. Quote Link to comment Share on other sites More sharing options...
Macca Posted September 22, 2017 Report Share Posted September 22, 2017 Hi Katcanny There is a neurologist is Melbourne called Dr Victor Gordon. He runs an autonomic testing clinic at Monash Hospital (they do a whole range of tests in regard to POTS). He is very knowledgeable and a decent doctor. Hope that helps. Quote Link to comment Share on other sites More sharing options...
katcanny Posted September 22, 2017 Author Report Share Posted September 22, 2017 Thank you so much Macca. If you don't mind me asking are you from Melbourne? I was wondering if you were what your journey has been from diagnosis to what specialists you saw to how you are functioning now? Hope this isn't too intrusive to ask but a lot of people are overseas and i know it's different from country to country. i will definitely try and get a referral to see him! Quote Link to comment Share on other sites More sharing options...
Macca Posted September 22, 2017 Report Share Posted September 22, 2017 Hi Katkanny I used to live in Melbourne, but moved to Brisbane a year ago. I saw Dr O'Callaghan and later Dr Gordon in Melbourne. I went to the autonomic testing clinic that Dr Gordon runs at Monash Hospital and they did a number of tests that confirmed autonomic dysfunction and POTS. I also saw an Exercise Physiologist based in Blackburn, Nathan Butler. Nathan has a particular interest in helping POTS patients and I found doing a graded exercise program really helped improve my functioning. Please feel free to pm me on the details for Nathan's practice. If your GP refers you to Nathan then you maybe able to get some sessions bulk billed. In terms of functioning; I went from very ill in 2011 and being essentially bed ridden and unable to work, to almost fully functional today. I still have some symptoms (e.g. I can't stand for any long periods without Midodrine), but I work full-time, I'm able to do lots of exercise (swimming, biking and walking) and the fatigue I used to suffer from is gone. I only need medication if I have to stand for longer periods of time, if I get a bad cold or the flu, or when I have to fly. It's frustrating to be really sick with POTS and medications are a process of trial and error. I tried lots of different medications before I found the right mix for me (Mestinon with occasional Midodrine). Hang in there, so many people improve over time! Quote Link to comment Share on other sites More sharing options...
katcanny Posted September 23, 2017 Author Report Share Posted September 23, 2017 Thank you so much for your input Macca. I will definitely look into both those professionals. I am at a loss as if I keep going this way then I will lose my job which I absolutely love. I'm see dr O'Callaghan but he doesn't seem that he wants to do any testing just try me on meds and see how I go. But being like this for a year is just too much for me, my workplace and my family. Quote Link to comment Share on other sites More sharing options...
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