I have been ill several times since 1996, I have had several of the symptoms of lupus... I have an appt. with rheaumatologist on April 2, and I am very scared. It seems like my family is falling apart because of it, and I am so scared...
With a bit of luck you will get some answers soonand start treatment that could make all the difference. Getting a diagnosis is a great help because you will know better what you are dealing and have validation for all your health problems.
Lupus takes many forms and differing degrees of severity. The most complicated and worst cases tend to be dealt with in online information and most of the already diagnosed people who post here have ongoing problems. In fact there are many people who lead normal lives with their symptoms well controled. Most of us have to make changes and adaptations of one sort or another to lead the best life possible and do what we can only do ourselves to tackle the disease. Mind it can take time to get the diagnosis and it can take time to find the right medicines and time to accept and adapt.
If you haven't done so already, make a list of your symptoms and a health history leaving nothing out. Read the articles on the info side of this site about diagnosis and blood tests so you have a better understanding and can check that all the right tests have been done.
We will give you all the help we can so don't hesitate to ask for advice about anything. It's often a great help just to have a place to talk about all the problems you are having without anybody getting bored or thinking you are whining.
I'm sorry to hear that you have been having trouble for so long and that you still don't have a diagnosis. Unfortunately it's not rare for diagnosis to take a long time. My symptoms started around 1997 and I was diagnosed last year.
I hope that your appointment goes well. There's no need to be scared, just well prepared and determined to get some answers.
Clare's advice about preparation is very important.
Hello, I expect your family are scared too. April 2nd is not too far off now. You will be fine,take Clare's advice so you get the best from your appointment.
We are always here, the people on this site are very, very kind and knowledgeable.
It is very understandable that you and your family are scared. It's even understandable that things feel like they are falling apart. However, I see a few reasons to be hopeful. First, you have been ill on and off for 12 years now and are still here to talk about it! You have made it this far without a diagnosis and without treatment. Just imagine how much better things should be if you are able to get a firm diagnosis and treatment at your upcoming appointments.
Secondly, it's more of a perception change than a reality change should you be diagnosed with lupus. You are still you, no matter what you are diagnosed with. A diagnosis doesn't change anything really, other than afford you the chance to start treatment that will help. This is the way I try to look at all the tests when I go through them. What's there is there, and I'm just going to find out what it is and start tackling the problem head on!
A word of warning - unless your GP ordered blood work in advance of this appointment - you will very likely NOT get a diagnosis at your first visit. Depending on what the rheumy sees at the appt, hears about your medical and family history, and the results of the bloodwork he orders after your appointment... then at the 2nd appt there is a better chance of a diagnosis if one is warranted.
Best wishes, and please keep us updated and let us know if there is any way we can be of further assistance. (((hugs)))