dancer65 Posted March 25, 2016 Report Share Posted March 25, 2016 So finally I got to see POTS cardiologist it has been a long hard struggle but I am so pleased I pushed to see him. He was interested in my AU ( total hair loss ) and my struggles with the progression of more auto immune diseases, he also thought the CFS I have had since I had ESB at 21 is the main reason. We also discussed the possibility of JHS although I never dislocate joints I have always been naturally flexible and I have tendonosis bursitis thin skin constant joint pain and muscle pain. Although I struggle daily to teach ballet and I have cut down my working hours he feels this is what has kept me on my feet, literally, due to the strength in my lower body. So the good news is he is writing to my GP to get a team of consultants to help me manage the symptons and look into other problems that I have.. I just hope that my GP will agree ! Fianally after 30 years I feel someone actually listened and took on board what I was saying. He also has two syncope nurses who you can contact for advise . I spoke to them about a number of issues that day they were really helpful He has taken me off florinef and started me on midrdine I have to speak to the nurses in two weeks to see how I am doing so I don't have to travel to London . It wasn't a long appointment , NHS so I am pleased I made comprehensive lists (more for my forgetfulness lol) which he asked to keep and I did mamage after 9 months to get graphs etc from my TTT last summer so apparently I have vasodepressor reflex syncope and POTS. Even better my husband and I spent a few leisurely days in London and we had some lovely quality time together I did miss having a glass of wine though! happy Easter to all of you and thank you to all of you who said keep going until you find the right DR ! Quote Link to comment Share on other sites More sharing options...
corina Posted March 25, 2016 Report Share Posted March 25, 2016 Sounds really good, glad you have found yourself a great Dr Dancer! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 25, 2016 Report Share Posted March 25, 2016 hi dancer, after all you've gone through, I'm so happy to have read that you found a great doctor. It's so nice that he seemed very willing to listen to you and he and his staff are so helpful! its a bonus when these doctor visits result in quality time with our spouses or friends, how nice for you both! I hope the medication changes will be helpful for you! Sarah Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 26, 2016 Report Share Posted March 26, 2016 Dancer, I'm so glad that you had a successful visit with this doctor! And that you had a mini vacation with the hubby! Happy Easter. Katie Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 26, 2016 Report Share Posted March 26, 2016 Hope! All the best I have to give!!! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 26, 2016 Author Report Share Posted March 26, 2016 Thank you everyone for your kind words Sara Quote Link to comment Share on other sites More sharing options...
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