[Lill]

I got my results yesterday and was informed that I don't have SLE after all, it was a false positive test result Although I feel overjoyed and relieved, I also feel very confused and upset because it puts me right back to square one again not knowing why I am experiencing all these unpleasant symptoms, they are now running tests for Rhum Arthritis. I am truly starting to believe it's all in my head and I am feeling physical pain because I just expect to....is this possible? I think hubby just thinks I am a hypocondriac and I try to be cheerful and smile through it and go to all the social events etc but I can't help how I feel, the headaches, joint pain, fatigue etc just wear me down, surely this can't be normal, either I really do have something wrong or I am going mad!!!
Lill xxxxxxxxxxxxx

 

[Clare.T]

Hello Lill

How disappointing I am quite sure you aren't going mad. Family members are often unhelpful because they don't know how to help. Depending on the nature of the relationship you could simply say how much it hurts you to be made to feel like a hypochondriac.

Did you find out what test this is? ANA? And I am wondering what the thrombophilia test results were. It sounds a bit lackadaisical to be only now doing tests for RA.
I am also wondering what 'false positive' means in this case - why has SLE has been excluded ? It can only be false positive if it is proved due to something else, not whatever it was supposed to be. If it is an ANA, at lower levels it can be due to many conditions including thyroid but further antibody tests should be done if it is positive and there are symptoms that suggest autoimmune connective tissue disease
Make it clear to your doctors that you want to know what tests are being done. It helps to feel in control of the situation and also to judge if the investigations are the right ones.

Have you thought about seeing a rheumatologist privately ? Getting lupus or something similar excluded is as important as getting diagnosed.

All the best

Clare

 

[KarolH]

Hi Lill,

Like Clare, I am wondering what False Positive you received? For what test?

Hang in there and know that this is NOT in your head.

It does sound like your Rheumy doctor is working with you and that is a good thing.

I hope they get to the bottom of this soon.

Be well, stay strong.:wink2:

 

[Lill]

Thanks for your resopnses and encouragement I really appreciate it,
The false positive in May I think was ANA, they then carried out another ANA, anti DNA and some others in July. The tests were carried out by a haematologist because the initial test was to find out why I had experienced 2 blood clots so I have never been referred to a rhumy, that's what I was expecting to happen yesterday.
When I mentioned all the symptoms I was having he said it may be RA but doubted it, that the palpitations and breathlessness was nothing to worry about at my age (45) and the headaches may just simply be migraines and to keep taking the Migralieve, cocodamol and brufen, he has taken more bloods to test for RA and said he will write to me with the results, if that too comes back negative, what then???
I am very reluctant to go to my GP yet again, with the same symptoms every time because like now I get so low I end up on ante-depressants but I don't know what else I can do, I do have private medical cover with our company but I doubt it would cover me for something like this as they won't cover anything long term.
Sorry to rant and be so negative, I do appreciate everyones support and the last thing I want to do is make anyone feel low.
Lill xxxxxxx