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I was diagnosed late in life, five years ago. I saw a really good specialist for a few years and he was really interested in exploring everything about POTS. He left for a post overseas and his replacement was lovely, too, but only stayed about a year. Then another specialist came on the scene and he seemed less tuned into POTS. My breathing was getting worse and so he decided to send me for some tests. The only thing that showed up were things I already knew that I had. I had a follow-up telephone conversation with a nurse and she got back to me later and the doctor wanted to sign me off. The main reason for this is that they can't change my meds as I have tried most of them and I am currently on a low dose of Nebivolol so feel that they can do little more for me. This is all despite my telling her that my symptoms of dizziness, breathlessness and blackouts have worsened. I kind of feel abandoned now. My GPs know very little about POTS and if I need to get re-referred it's going to be a six month wait to see someone. 

Has anyone else had this happen to them? 

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I feel totally abandoned and have fallen through the cracks even without being cleared by about 6 of them - I’m actively seeing them. However, I have had specialists clear me very prematurely without trying to help, from the first visit: rheumatology, endocrinology, etc. my issues have only continued to worsen. I feel for you!

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@TCP - I am truly sorry and can imagine how utterly abandoned you must feel. These illnesses are scary and unpredictable, so not having the support of a knowledgeable physician is tough. In the beginning of my POTS journey I too was signed off by different cardiologists, sometimes it was b/c they thought there was nothing wrong with me and other times b/c they felt they could not help me ( as it seems in your case ). However - a chronic illness such as yours always requires specialist care for MAINTENANCE of the condition, so your GP should definitely send you to another specialist ( hopefully a better one ). It is frustrating that specialists have such long waiting lists but it is not realistic for you to be stuck with a GP to handle your complicated symptoms. I am sure your GP is aware of that.

What I have done when I had only my ( albeit absolutely wonderful ) PCP to lean on is drive him crazy with relentless visits and complaints. Soon enough he did whatever he could to get me seen ASAP, and in many cases it worked to get me in sooner. I am not sure how that works in the UK but I think the phrase " the squeaky wheel gets all the grease " is universal. 

Hang in there and keep looking for an experienced physician, even it takes 6 months. Best of luck!!!

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On 5/24/2020 at 1:38 PM, TCP said:

I was diagnosed late in life, five years ago. I saw a really good specialist for a few years and he was really interested in exploring everything about POTS. He left for a post overseas and his replacement was lovely, too, but only stayed about a year. Then another specialist came on the scene and he seemed less tuned into POTS. My breathing was getting worse and so he decided to send me for some tests. The only thing that showed up were things I already knew that I had. I had a follow-up telephone conversation with a nurse and she got back to me later and the doctor wanted to sign me off. The main reason for this is that they can't change my meds as I have tried most of them and I am currently on a low dose of Nebivolol so feel that they can do little more for me. This is all despite my telling her that my symptoms of dizziness, breathlessness and blackouts have worsened. I kind of feel abandoned now. My GPs know very little about POTS and if I need to get re-referred it's going to be a six month wait to see someone. 

Has anyone else had this happen to them? 

Hi, our healthcare system is different in the US.  It's unusual to have a doctor end the relationship but we are used to having a doctor that can't help.  It is frustrating and heartbreaking and I am sorry you are dealing with this.   You will need someone to work with in the long run, so you may want to think about joining the waiting list for the new doctor if that is the best way of finding a new specialist. 

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