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Positive first appointment with POTS consultant


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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 ! 

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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!


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