4 options on diagnosis of lupus SLE: As I said I... - LUPUS UK

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4 options on diagnosis of lupus SLE

Sher58 profile image
12 Replies

As I said I have been to see for doctors that I have two of them have diagnosed me with lupus the other two said it was a positive negative test . And

they did not believe I have lupus however I do have an autoimmune disease. I just wanna and I don't know what to do about it going to have a tiebreaker and see another doctor rheumatologist has anyone else ever experienced doctors that do not want to out right say that you have lupus. I have also been diagnosed with connective tissue you disease. I had a ruptured silicone implant and they removed it in 1999. Now I'm star you have sores in my mouth hair is falling out my tongue feels like it's on fire. Can anyone tell me if they have had similar experiences, And what I can do to find out what I need to do to get help. Thank you

12 Replies
Puska profile image
Puska

A positive ANA doesn't necessarily mean you have lupus as 10% of the population can have a positive test that means very little. Maybe that's where the confusion lies? If your antidns-DNA tests are positive then that most likely does confirm an SLE diagnosis with other symptoms. Doctors don't want to label unnecessarily so they seem rather reluctant to call it as lupus when it isn't clear cut.

Ianrussell69 profile image
Ianrussell69

I've seen 3 rumi consultant one said I had lupus two said I had uctd but don't worry the Meds are the same for lupus .? Ana pos then neg then pos then neg but I think this is very common

Sarahd1609 profile image
Sarahd1609 in reply to Ianrussell69

My rheumy said I've got arthritis but she thinks I have lupus so she's treating me with meds that could work for both. It's amazing that just a tweak of a dose goes from treating one thing to another xx

Sarahd1609 profile image
Sarahd1609

I started off being told I had reactive arthritis, then I was told it was psoriatic arthritis, I also have ankylosing spondylitis, hyper mobility,osteoporosis, Then tenosynivitis and sjrogens syndrome and now querying

lupus. Because a lot of these symptoms overlap it is really tricky for the rheumatologists to make a diagnosis. I'm 4 years in and still haven't found the right balance but don't give up. They will help it just may take time and trial and error

Sher58 profile image
Sher58 in reply to Sarahd1609

Thank you

Sher58 profile image
Sher58 in reply to Sher58

Just came back from doctor and my Ana is positive along with DNA positive. Had a ruptured silicone implant and wondering if that caused the lupus. Also diagnosed with connection tissue disease. Any one dealing with this?

jennyall12 profile image
jennyall12

Hey, how do you know you have Lupus?

shareasmile profile image
shareasmile

In 2013 I was diagnosed with sero negative rheumatoid arthritis by my first rheumatologist and treatment began. After he left, my second doc tried to tell me I had fibromyalgia. That made me soooo angry that I sought out my current rheumatologist. She ordered an ANA blood test which came back strongly positive. But none of the other tests for lupus came back positive. So my diagnosis is now Connective Tissue Disease. I have many symptoms of several autoimmune diseases, but nothing specific can be confirmed at this point. I am on a biological medication (many of these work for various AI conditions), so I am content that my disease is mostly under control. I will always seek out a more specific diagnosis, but these conditions are difficult to diagnose unless the bloods confirm it. Be patient. At this time, the most important thing is to have a good doctor that listens and is trustworthy and personable.

All the best to you!

Sher58 profile image
Sher58 in reply to shareasmile

Thank you so much, for your insight.

I'm similar to Shareasmile - initially diagnosed and treated for seronegative RA - then last year rediagnosed with primary Sjögren's. My ANA is clear positive but not specific markers for anything. So I was given a lip biopsy which was 100% positive for Sjögren's. Never had inflammatory arthritis come back after 2 years on Methotrexate and Hydroxy and another RA med. If your anti dsDNA is positive then this points a lot to Lupus I believe. Can't answer about implant though.

Sher58 profile image
Sher58 in reply to

Thank you for your insight. I very much appreciate it.

Mitsy11 profile image
Mitsy11

Hi Sher

I am having the same problem!

My mum had SLE and I am suffering from the same issues moth sores severe fatigue , aching joints , dizziness I’ve already had discs removed from the top of my spine the same op they wanted my mum to have but at the time she was just recovering from breast cancer and did not want another op, I feel so poorly all the time because it doesn’t show in my blood they will not give me a diagnosis I wish they would read my mums notes and see the same similarities, I’m so frustrated.😢

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