[Jubes]

Hello

I have wondered for a long time if I have SLE but had negative autoimmune tests recently and also 8 years ago.

I have migraines, raynauds, joint pains, fatigue, abdominal pains, all of which have got worse over the years. I have also recently been told I have overactive thyroid, which the doctors think is autoimmune.

Has anyone else had experience of either being diagnosed SLE with negative blood tests, or being diagnosed and then later the blood tests turning positive?

I'm wondering whether the negative tests really do rule SLE out in my case?

Thanks for letting me know your experiences.

Jubes

 

[LoopyLoo]

Hi Jubes and :welcome:

I'm Pam from the UK diagnosed with SLE in 2006. It sounds like you've been through alot over the last few years. I can understand your frustration with the bloods - I had several negative tests while others were showing an indication of something going on. I finally had a positive ANA test, the only one I've ever had which got me my diagnosis.

It really depends on the doctor, it is possible to be diagnosed with an autoimmune condition based on symptoms alone. There are many members who feel in limbo with a diagnosis so you are not alone. Some finally get a diagnosis of SLE or another autoimmune condition. Hopefully the information and support you find here will help you on your journey.

I am by no means an expert and I'm sure others will come along to offer their experiences.

Hugz, :hug:

Pam xxx

 

[Maia]

I had positive bloods immediately, so this wasn't my problem. However I've read many stories from others who share the trouble you have getting a diagnosis without positive bloods. It is possible to be diagnosed without positive blood test results, but only expert physicians will do this it seems. Many here have discussed having problems for a few years or more before anything positive showed up in their blood tests.

With your history, have they tested you for multiple types of autoimmune problems or just run the ANA test? It can be difficult to get the other tests done without a positive ANA, but sometimes other tests will come up positive when the ANA does not. Some of your symptoms could be consistent with anti-phospholipid antibodies for example.

 

[cemc]

It does seem to be a bit of a post code lottery in the UK. Where I live we dont have any lupus specialists, and our NHS won't refer out of area. So, when a general rheumie says that bloods are neg, though it could possibly be lupus still, but he doesn't want to see me again, then I'm stuck. He didn't see any need to refer me to a lupus specialist, possibly because there really don't seem to be many at all in scotland anyway. I also had one skin specialist who was dead sure it was lupus, but next clinic it was a different visiting consultant who said definitely not, so I didn't get the biopsy the first was going to do and have been discharged from that clinic too.

This is one time I'd really prefer living in London (with access to St Thomas) rather than the lovely scottish rural area I do live in.

 

[halfpintfl]

Hi Jubes,I am one of the Lupies that you are talking about. I was diagnosed by my symptomes alone( as far as I know)
I say as far as I know because I never asked him what my bloods were after each test, and he had me on a Standing Order, which means that I got tested every week, and they faxed him the results. I was not there to know what my bloods were, I was there to find out why I could not stop this awful fatigue, pain,etc. What was wrong with me? By the way, for your information for later, there is no one blood test that can say "yes" you do have lupus, or, "no" you do not have lupus. Keep a diaryof your symptoms, and add to it anything that happens that is unusual I hope that I have been able to help you, and keep posting.:wink2: ​

 

[Katharine]

Hi Jubes,

I was also diagnosed without having a positive ANA blood test. It took many years to find out what was wrong. I think the disease is extremely complex for the docs too and it's not the sort of diagnosis that is given lightly.

I was eventually diagnosed through a skin biopsy ordered by my rheumy as she couldn't find out what was wrong.

My ANA has not become positive since but that may be due to having had to take stronger medication to control the disease. That has put all my other bloods back to almost normal too. I did have some blood abnormalities but they were so specific that even the reumy hadn't looked for them at first.

bye for now,
Katharine

 

[LolaLola]

Dear Jubes, I was diagnosed months and months before the bloods changed. I was already being treated due to severity of symptoms. After years of being ill and getting nowhere locally I was diagnosed in just two appointments.
I don't know if you are in the Uk but if you are I can totally recommend seeing Dr. D'Cruz in London either NHS or privately if you have to.
Don't doubt yourself.
x Lola