How did you get diagnosed?

Hi all! I've come here after going through a long list of possible problems, my doctors have thought of everything from OCD & Anxiety to Diabetes. I am still undiagnosed, but my new doctor (best one so far) believes Lupus (SLE) may be a possibility, she has also discovered that I have Polycystic Ovaries and some mysterious fluid on my pelvis, could be endometriosis.

So I was hoping someone would be able to give me advice on getting a diagnosis and how they managed to get diagnosed. Maybe even some tips for the doctors office? I'm a 21 year old woman and I've had these symptoms for 4-5 years, they flare up and leave, but the fatigue and weakness, nausea, confusion and pain is pretty constant.

-Fatigue

-Nausea

-Vomiting (sudden and violent and followed by shakes)

-General Shakiness

-Fainting

-Brain fog, inability to concentrate

-Confusion & memory loss

-Blurred vision

-Eye floaters & seeing yellow and black spots and outlines shapes constantly

-Numbness in legs and arms and fingers

-Very cold hands & feet (blue finger nails and hands lock from cold)

-Constant thirst (I need to drink 4 litres of water a day and still thirsty)

-Night sweats

-Stomach pains

-Dizziness

-Dizzy and fatigued after basic activity (flight of stairs, standing up)

-Shortness of breath

-Underweight, can't gain weight

-Low blood sugar (I'm getting anything from 2.7 mmol/L - 3.9 mmol/L regularly after eating)

-Swollen and red lymph nodes, protrude from body, but no infection.

-Joint pain, stiffness, swelling & seizing up so I cant walk or bend

-Chest pain when deep breaths taken

-Pain and tightness along spine

-Neck stiffness (upper neck and very specific pain inside skull)

--Dry eyes (Eye doctor says they are dry and damaged from quickly evaporating tears)

-Migraines

-Constantly runny nose

-Very prone to catching bad chest & sinus infections (12 month long chest infection caused bruised sternum last year)

As you can see these symptoms are long and vague! Any advice greatly appreciated.

I have a chest xray & an ANA blood test next week. Thank you all!! xx

5 Replies

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  • Hi kalmillar,

    Getting an ANA test is a good first step, so you'll have to let us know how that goes once you've got the results back.

    You may find it helpful to order one of our free information packs. It includes a booklet about how lupus is diagnosed and another which gives you general information about lupus and how to get the most from doctors appointments. You can order or download a pack at lupusuk.org.uk/want-to-know...

  • Hi kalmiller

    If you get a positive ANA result your GP should refer you to a Rheumatologist who might be able to make sense of your many horrible symptoms!. Push for this if he/ she doesn't. ANA showing means there is something going on with your immune system but it's not a definitive test for Lupus. Hope that's helpful and good luck, it can be a long road to a diagnosis!. X

  • Hi kalmiller

    If you get a positive ANA result your GP should refer you to a Rheumatologist who might be able to make sense of your many horrible symptoms!. Push for this if he/ she doesn't. ANA showing means there is something going on with your immune system but it's not a definitive test for Lupus. Hope that's helpful and good luck, it can be a long road to a diagnosis!. X

  • It can be very difficult sometimes to pick apart the possible cause(s). I was diagnosed ANA neg lupus in 2001 and managed without much in the way of treatment until the disease course suddenly changed in 2012. My diagnosis was reviewed by a Prof of Rheumatology and revised to SLE sub phenotype (UCTD). I have no antibodies whatsoever, normal ESR but low C3 & C4 plus low WBC and am on immunosuppression. My point is that many of us don't fit a typical profile but an intermittent/fluctuating pattern of flare/remission would point to an auto immune condition. It can also take many years for a recognisable disease pattern to emerge. Mine continues to evolve even 20 years post initial presentation. Be prepared to persist. A diary and photos can be helpful too.

  • Get tested for Celiac too. Multiple symptoms match celiac/gluten sensitive but could be multiple issues.

    Good luck!

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