Lupus or ME

Hello. Just want to get people opions . From the beginning, nearly two years ago. I had a stomach bug, which I just never seemed to recover from, I felt faint, sick , shooting pains up prodomontaly my lower legs and for arms and felt like I'd been hit by a bus , every single part of my body ached. I couldn't get through the day with naps every few hours. And my glands in my throat were so large that they were significantly bulging out of my neck. It's like somebody took my batteries out.

The doctors I tally though it was just a stomach bug, then stressed( I wasn't stressed, only with being so I'll) then vertigo. I was referred to ENT, who in turn referred me to a neurologist. 10 months later!!! I saw the neurologist who said I had migraines and also believed I could have a auto immune disorder. Throughout the waiting, I've developed all sorts of weird and wonderful symptoms. I had rashes that randomly appear on my middle finger back of neck and face. Stomach problems, bouts of diarrhoea and constipation and I bruise like a peach. I have times when my statins dye down alittle, and when they flare up and wipe me out.

I'm now under a rheumatologist at guys hospital, who again was convinced from examining me that it was lupus. I had obvious lace rash on my legs during the examination. My blood pressure was and always has been high for my age, no medication. But results for lupus came back negative. Now waiting for my second appointment on Monday. I've also just been diagnosed with IBS. Did anybody else have negative LUPUS results, but then turned out to be LUPUS?

Or is it ME. I've never felt so bad in my life , if this is ME, there really needs to be some eduction on just how debilitating it can be .

Any thoughts welcome

7 Replies

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  • I've heard that its not uncommon to have lupus and not have the blood work. However lupus isnt the most common thing out there so its harder to be diagnosed without the blood work.

    Over the past few months I have a had a lot of symptoms to match up with lupus just not the blood. So when the rhemo guy I was seeing refused to help me as it wasn't in my blood, i went back to my lovely gp. He agreed with me wanting too see a specialist and I now have an appointment with one mid august. So yeah If you dont get the results you feel are right keep fighting and remember you can always be asked to be sent for a second opinion.

  • I too am going through the same sort of gammit. Oddly enough I just made a post quite similar to yours.

    Let's hope we get the answers we need soon and hope that we get the proper treatment we need :)

  • Hi Alvescot1984,

    Lupus can sometimes present without positive blood test results. This is called seronegative lupus, but it is very rare and not recognised by all consultants. In some cases, patients without all the clinical markers, but with clear symptoms of a connective tissue disease like lupus may be diagnosed with Undifferentiated Connective Tissue Disease (UCTD), sometimes known as a 'lupus-like condition'. This is often treated in the same way as lupus and may or may not develop into a clear connective tissue disease diagnosis in the future.

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • It also sounds like Lyme Disease.

    Seronegative diseases exist but unfortunately not many doctors are willing to recognize that...

  • HI there, my first test came back positve, but they ran a 2nd test and it was lupas. My symptoms were almost exact to yours. I am exhausted all the time. My liver enzymes are high ,so no steroids yet. They have me on plaquentil, which is making me forgetful. I am 40 yrs old and was just diagnosed 1.5 months ago.

  • Thanks for everybody's reply. Got another appointment with the rheumatologist tmw, so fingers crossed I have a diagnosis.

  • Hi, I was convinced that my autoimmune nightmare began with a gastrointestinal illness several years ago because my pain and fatigue began during a time when I became nauseated, had headaches, major constipation followed with random diarrhea, stomach bloating feelings, etc...but I now realize that the autoimmune disease was in me for a long time and perhaps a gastro illness was the trigger of a major flare. Be aware that IBS can be a manifestation of several autoimmune diseases including thyroiditis, psoriatic disease, crohns disease, colitis, etc....i'm sorry you feel bad and hoping you get some good answers soon.

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