[Joandublin]

Hi Elaine

Welcome to the Forum from a fellow Irish woman There are a few of us Irish people here on the boards.

I can certainly understand your anxieties about seeing the Rheumatologist today. I think many of us have been where you are now. Its hard when you have felt so ill for so long. :hugbetter:

The important thing to remember is that you know your own body and you just have to believe in that and not let others put you off your determination to find out what is wrong. Think of today as a step in the right direction of determining what is going on with your health. Its great that you have a good GP who is supportive and it sounds like he/she will be a strong advocator in your diagnostic journey. Remember that Lupus can be a difficult disease to diagnose as diagnosis is usually determined through a combination of symptoms and blood work.

Dont be surprised if your Rheumtalogist appears to downplay your symptoms today. That would be the experience of a lot of people and it doesnt mean that they dont believe you have something autoimmune going on. It does mean that they are extremely cautious in what they say - particularly at a first appointment.

They will take a clinical history from you today so if you have time before your appointment write down as much as you can remember of your symptoms. Is there anyone in your family who has any autoimmune problems? They should ask questions about family history as well. Have you had any problems reacting in the sun? Its very common for people with Lupus to have problems with the sun (rashes, joint pain, fatigue, etc). Have you checked out the ARC Lupus criteria? Its on a post pinned at the top of the Not Diagnosed Yet Forum. Check this out and see if anything rings any bells.

Make sure they take a urine sample today and have your blood pressure checked. They will probably take more bloods today and give you an appointment to return.

While you are waiting on this process to move forward, ask them about symptom relief. Dont expect a diagnosis today. It would be most unusual at a first appointment.

By the way, who is telling you it is all in your head? Whoever they are just shut your ears off to them (better still tell them to get stuffed). Many of us here have been made to feel like hypochondriacs. Believe in yourself Elaine and dont be put off finding out what is wrong so that you can get the appropriate treatment.

I have to rush as Im heading for work soon but let us know how you get on today. Stay in touch

Take good care
Joan:rose:

 

[Joandublin]

Hi Elaine

Great to hear you have stiffened your spine for the battle!

We have one glaring thing in common. The surgeon who removed my gall bladder in Dublin in 2004 (pre diagnosis) told me that I need to talk to someone about my 'symptoms' as there was nothing else he could do or recommend! I wonder was he visiting down your neck of the woods two years ago! :hehe:

Best of luck today!

Luv n stuff
Joan:rose:

 

[Joandublin]

Hi Elaine

Me here again rushing as usual! Im heading off for the weekend. I just wanted to stop by and say Im sorry about the almost certain diagnosis but at least you can begin treatment and start to get a better quality of life. By the way the anti DNA is usually a clincher for a Lupus diagnosis. I have those antibodies as well.

Steroids are the drug we love to hate. They are a godsend and a lifesaver but they do have side effects. Of course most of the side effects depends on the dosage.

Has he not started you on Plaquenil? Im surprised if thats the case and I hope he is planning to start you soon. Its a disease modifying drug and one which is tolerated really well with the vast majority of people. Its slow acting and it will slow down the progression of the disease over a period of time. Many people will stay on it for years and sometimes the rest of their life. Its a sort of baseline treatment.

Have a good discussion with him about the steroids. Sometimes they are needed for a short period of time to get the disease under control or until other drugs (like Plaquenil) have had a chance to kick in. Ive been on steroids now since November 2005 but at a low dose.

Sorry this isnt longer. Im really in a hurry. I just wanted to stop by.

Oh, by the way, if you havent got things like life assurance etc sorted out do so as soon as you can before you get any official diagnosis. Nothing frightening or anything. Its just that its impossible to get life assurance with a disease like Lupus. Take it from one who knows.....

Catch you soon
Joan:rose: