[samdbh]

Hi

I am a little confused and I guess I am looking to see if anyone else has had something similar happen to them. By accident I had an ANA test done - which I tested positive to. I then got told what that could mean and looked up on the internet what Lupus was and the symptoms, while I waited to be referred. I have or have had many of the symptoms that are written on these websites all about lupus: pluerisy, anemeia, a mild butterfly rash on my face, I get rashes in the sun - although I always assumed these were Heat rashes, I get very painful joints with swelling and redness - especially in the hands, I get random fevers and servere headaches, I get dry, itchy eyes and my blood is prone to clotting. I have just been to see a rheumatologist and he has said that I don't have any symptoms of lupus, even after I told him the list above. I am just a little confused, now I understand that you can get all these symptoms normally anyway, but surely there is reason enough to suspect Lupus? Anyone else had the same? Or have any advice? Or am I just putting two and two together and coming up with five???

 

[cath]

Hi Sam,

Welcome to the forum.

Your first post reminds me a lot of my first post:hehe:!!!

You are indeed correct in wondering why your rheumatologist has come to this conclusion, as your symptoms and positive ANA do seem to point towards lupus. Do you know if your rheumatologist regularly sees patients with autoimmune diseases? Some are specialists in common diseases like osteoarthritis and almost never see a lupus patient and so miss it.

I think you should be seeking a second opinion.

Where do you live?

Do you know what blood test it was that showed you have a clotting tendency? Have you ever had a clinical problem because of this?

How was an ANA done by 'accident'? Usually it is a bad idea to run ANA's on people who don't have symptoms of lupus, but you do have symptoms, so an ANA test was indicated. Do you know what the titre and pattern are?

Hang in there and don't give up. It takes many people with lupus a long time and lots of frustration before they get diagnosed. It took me about 1 1/2 years and 2 rheumatologists, an immunologist and an allergy specialist before I finally got there:hehe:.

Read up on lupus, and feel free to ask any questions you may have.

X C X

 

[Maia]

All I have to add is I'd be adding 2 and 2 and getting 4 if I was in your shoes. Perhaps the rheumy was saying that he/she doesn't see any symptoms in you right now? Were you in a relatively healthy state when you went to see the rheumy?

I would also advise a second opinion, and possibly taking photos for proof of these rashes that you get as they do have a knack of disappearing right when the appointment comes.

My history was much like yours for a few years before I got really ill and sought help from a doctor. Then I was quickly diagnosed after I started complaining!

 

[samdbh]

confused

Thank you so much for replying.

I dont know the doctors background at all. He is now going to run the ANA test again in three months time and see what the outcome is from that. He says he expects it to be negative this time and then this will prove I definitely dont have it.
I had multiple blood clots in my lungs ten years ago and they did tests after this - not sure what. The ANA test was done by my chest specialist as I have had a pain and tenderness in my chest since the blood clots and I went to him originally to get this diagnosed. He said he 'randonmly' dropped this test in and that he didnt mean to.....
When I went to see him I was in a healthy state yes, except for my chest problem, my face and the pain in my hands, I was fully healthy.
I am not very good with doctors, I get scared and dont want to sound like a hypochondriac - so I brush things off , ignore them and dont say anything.

 

[greenhaggis]

Welcome Sam,

Sorry to hear that you are going through all this stress and I hope you will find some answers to the problems soon.

When I went to see him I was in a healthy state yes, except for my chest problem, my face and the pain in my hands, I was fully healthy.

You obvioulsy were not in a fully healthy state at the time if you had chest problems, pains in hands and something going on with your face!!!!

It is not classed as healthy to have these problems - sounds like you need to be more honest with yourself so that you can move forward and deal with your health issues - remember you are not a hypochrondriac, but do need to be more proactive and brave in getting to the bottom of things!

You have many things going on that do need further investigation so complain away to the medical proffession!

Take care!

Lesley