suspected lupus

[shadow30]

Hi all, just looking for any advice on your own experiences when you suspected lupus. My dr thinks I either have lupus or CFS however I have a lot of symptoms of lupus and the doctors keep palming me off. I’ve had lots of bloods done, the ANA negative and all the other bloods other than the MCHC came back normal (I’m not a HCP so obviously can’t interpret them) but these are my symptoms:

Extreme fatigue, Fluctuating weight,  Painful hands - most common, Painful joints, Shin splint type pain, rash over both cheeks / nose (symmetrical), Brain fog, General headaches different to migraines, hair loss Dry eyes,  Stomach problems 

The symptoms aren’t always present but keep flaring up.

Just looking for a bit of advice if possible, I have the drs today and I think they will just play the symptoms down again like they have been doing so I am just wondering how ever got else’s experience with being diagnosed was and if it can still be diagnosed even if the bloods don’t show it.

I’ve only had the symptoms for about 6-9 months that I’ve noticed and I’m a 25yr female,

[Kath1]

Hi shadow, my advice is to keep a symptoms diary to show the doctor, then they can understand the frequency and the range of symptoms. I would also ask to see a rheumatologist. I say that because it was only when I saw a rheumatologist that I was diagnosed. Be persistent, sadly it can take a while to get a diagnosis, autoimmune issues are just tricky. I wish you all the best.

[shadow30 in reply to Kath1]

Thank you Kath1! I have started to keep a symptom diary and when I saw the doctor yesterday they said they would refer me to rheumatology! Hopefully will get some answers at some point.

[Tiggywoos in reply to shadow30]

pictures are really important too … I take them on my phone then print them out gives greater impact xx

[dg70]

I agree try and get a referral for a rhuematologist. This has to go through a gp. If it's nhs it may be many months wait. If private the gp will write a letter and you can choose who you see and where. They will willingly write a letter if your going private. It costs between £150 and £250 per hour but its how I got my diagnosis. Any blood tests can be done back with your gp for free as long as rhuemy writes a note to your gp to do them. I'm not sure if you've had a double stranded dna blood test but that was the one blood test that got me a definite diagnosis of lupus every other blood test was negative. A good rhuemy will look at symptoms too. It was just symptoms that got me diagnosed with sjogrens. Exhaustion and dry eye, mouth and nose are typical of sjogrens. Hope you get somewhere. Depending on where you live there may be someone here can recommend a good rhuematologist.

[Lulamay7]

Take photos of your face rash