TCP Posted July 11, 2015 Report Share Posted July 11, 2015 After a long hard fight I have finally managed to get a diagnosis of POTS and Vasovagal Syncope. I was referred to a local doctor trained in these areas of expertise and I got the diagnosis confirmed, Previously to this two other doctors would not commit to saying that I had it. He was very thorough, attentive and actually listened to me and understood all that I had been going through for so long. I am relieved. He appreciated how debilitating my condition was along with EDS, neuropathic pain and chronic fatigue. I could have kissed him, but that would have scared the life out of him!He has given me lots of advice and is trying me on Ivabradine again with a much lower dosage. I am also going ahead with his advice re-fluid intake, salt, exercise (twice daily) and compression stockings etc. I said my main worry with compression stockings is the nerve pain, as I have tried them. He said to just use them when I exercise if they are too uncomfortable. We'll see how I get on with the Ivabradine and adjust or change as and when necessary.I will be assigned a nurse with an interest in this condition who will be a source of support and advice and also some follow-up appointments. He told me it takes time to make changes that will help me, but it will make me feel better than I do now. Earlier this week I had the nerve conduction tests and EMG. The neurologist I had seen a few weeks ago said nothing would show up. I knew that the more widespread small fibre neuropathy would not show in conventional testing on the longer nerves, but some damage has shown up in my calf muscle. It's been a very productive week and one that I am extremely grateful for. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 11, 2015 Report Share Posted July 11, 2015 Wow, TCP! I'm so pleased for you! It been a long time coming and I'm just so glad you found the right doctor after all this time. Quote Link to comment Share on other sites More sharing options...
Arez2row Posted July 11, 2015 Report Share Posted July 11, 2015 Congratulations! You must feel- in a sense- relieved to have finally received a diagnosis! I remember the feelings searching for answers, and someone who was willing to truly listen. I hope that with this, and the suggested medical/therapeutical modulation so you are able to feel better. Best of luck!! Quote Link to comment Share on other sites More sharing options...
gjensen Posted July 11, 2015 Report Share Posted July 11, 2015 This is great news, and I am sure a relief for you. I have followed your story, and this turn of events has put a smile on my face to. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted July 11, 2015 Report Share Posted July 11, 2015 Sigh of relief and a direction Quote Link to comment Share on other sites More sharing options...
Raisin Posted July 12, 2015 Report Share Posted July 12, 2015 Congrats to you for your courage to hang in there and be a great advocate for yourself. Good for you! Quote Link to comment Share on other sites More sharing options...
corina Posted July 12, 2015 Report Share Posted July 12, 2015 Perseverance pays off, I'm happy for you TCP! It takes a lot (emotionally and physically) to persevere, I'm happy you were able to do so! Quote Link to comment Share on other sites More sharing options...
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