Peter Charlton Posted December 14, 2018 Report Share Posted December 14, 2018 Following my dismissal from the Autonomic Unit of the UCLH in London as I didn't show any symptoms of POTs which is not something I ever claimed to have symptoms for anyway. I saw my GP today and she admitted she was at a loss, she actually asked me if I could research for a Doctor in the UK that she could refer me to, which I thought very professional of her, most doctors here don't like any input from the patient. So, does anybody know any specialists her that can look into other aspects of Dysautonomia rather than just the common cardio-vascular aspect please? Maybe one who is familiar with all aspects of Neurology as my condition is definitely something wrong with my nervous system even if it doesn't fall under the Neurology umbrella. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 16, 2018 Report Share Posted December 16, 2018 Have you thought of getting in touch with STARS ? They have a helpline and a list of Dr's many speak at their seminars. I spoke to them when I was desperate and the lady I spoke to was very knowledgeable and helpful. It was because of her I got referred to my syncope unit in London. I was seen in four months from my Dr referring me which shocked me as I waited 18 months for TTT ! I hope you find a good Dr soon . Good Luck Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted December 19, 2018 Author Report Share Posted December 19, 2018 On 12/16/2018 at 7:58 AM, dancer65 said: Have you thought of getting in touch with STARS ? They have a helpline and a list of Dr's many speak at their seminars. I spoke to them when I was desperate and the lady I spoke to was very knowledgeable and helpful. It was because of her I got referred to my syncope unit in London. I was seen in four months from my Dr referring me which shocked me as I waited 18 months for TTT ! I hope you find a good Dr soon . Good Luck Hi Dancer, who is and how do I find "STARS" please? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 19, 2018 Report Share Posted December 19, 2018 Hi Peter Tel number is 01789 867503 STARS stands for Syncope trust and reflex anoxic seizures. They are a charity , they also have a Web page with lots of helpful information. www.heartrhythamalliance.org They seem to know about autonomic issues so I hope they can help you . Keep us posted x Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted December 19, 2018 Author Report Share Posted December 19, 2018 1 hour ago, dancer65 said: Hi Peter Tel number is 01789 867503 STARS stands for Syncope trust and reflex anoxic seizures. They are a charity , they also have a Web page with lots of helpful information. www.heartrhythamalliance.org They seem to know about autonomic issues so I hope they can help you . Keep us posted x Thanks Dancer, though looking at the website they look to be a charity for fainting and seizures, neither of which I get and whilst I m sure somebody there would have the expertise to be of assistance, I couldn't use resources that would be better employed on the people the charity is set up to help. Tomorrow I have an appointment at my doctors for yet another blood test, in anticipation of being referred to a Rheumatologist, my GP noticed I have family members with ME and with Fibro-myalgia, so she has decided to explore that route? Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 19, 2018 Report Share Posted December 19, 2018 They also are associated with heart rhytham alliance and in their newsletter, I am a member , they have articles on heart rhythms Afib etc which is why I suggested them .I haven't been on their website in a long time . I have ME/CFS and recently I got diagnosed with fibro, I hope you find some help ! Quote Link to comment Share on other sites More sharing options...
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