This subject is worthy of a page of its own. The sad truth is that GP's don't know enough to be any help at all when you have a serious chronic illness. As I always say they know a little bit about a lot of things, but unless they specialise they often try to put you under whatever heading makes their life easier. It is often the case that the patient comes to know more and understand their illness much better than most GP's and even many Consultants!
I went to three different GP's with my symptoms. One of which told me there was no way I could have AS, which is what I was first diagnosed with, because I am a woman! She had read that more men get it than women so had decided that a woman in her surgery couldn't possibly have it!! Another one told me it was all down to pregnancy hormones, something I believe a lot of women are told when they complain of any symptoms during pregnancy, and the reason a lot of women are also misdiagnosed! The final one was better, insisting on testing me for anything that could vaguely explain my symptoms. When some of those came back as odd looking, but not enough to base a diagnosis on he referred me to a Rheumatologist.
I had hoped to get answers quite quickly. Unfortunately when it comes to getting a diagnosis they are so scared of giving a diagnosis and getting it wrong that they keep you hanging and don't tell you anything. I went through three doctors and five rheumatologists and not one of them agree.
They told me I have fibromyalgia early on....that bit was easy. I also have an autoimmune disease...currently coming under mixed connective tissue disease, which is an umbrella term for a number of possible autoimmune diseases so a bit of a cop out really!
As I mentioned briefly in my first post blood tests do not always give a clear picture of what is happening inside your body. I have come across many patients who tell me they were diagnosed with an autoimmune disease based on symptoms alone because their blood tests came back negative or inconclusive. This occurrence is called 'seronegative' and it takes an experienced Consultant to be able to recognise this and diagnose appropriately. In fact when it comes to looking for antibodies in the blood many results can vary during the course of the illness with disease activity and in response to different treatments. It can take many years for bloodwork to match the symptoms a patient is displaying. This can make it hard for some inexperienced doctors to believe what the patient is telling them and often leads to patients feeling their doctor thinks they are making it up or being told it is all in their head!
The average time to diagnosis from first symptoms in the case of Ankylosing Spondylitis is eight years! For Lupus it is four years! sjogrens is four years! and RA it is nine months, which is somewhat better. These figures are shocking and partly the reason I have started this blog. More needs to be done to raise awareness of these horrible chronic painful diseases, all of which have no cure and are very hard to live with. If you suffer with any of these or even other chronic illnesses do not be afraid to educate your doctors. Get hold of whatever leaflets or posters you can from official charities for your illness and ask your GP to read them and display them in the surgery. The more they know the more they can help their patients. It is often not that they don't want to help, it is just not what their job is about. They are trained to deal with less serious run of the mill illnesses. If you are very lucky you may find a rare GP who will go out of their way to research your illness and do whatever they can to help but more often than not it is not within their level of expertise and hence the reason you get referred to a specialist!
The moral of the story is do not rely on your GP. Do not be afraid to change your GP if you feel they should be performing better or are not listening to you or you just don't have a connection with them. The same applies to the Specialists. You have to be advocate for your own health. Do not stop pushing for answers and don't accept one opinion as the only answer. Quite often Doctors will disagree with each other. Listen to and trust your own body. You know it better than anyone...including your Doctor!
