My story so far.

[JCM1992]

So my story starts in 2014 I was referred to the rheumatology clinic for joint pain, mouth sores, I did display some inflammation in joints and was given cortisol injections. I had an ANA Factor of 1/1280

I was kept under the clinic for a number of years but as the condition didn't progress I was discharged.

I've always suffered with fatigue, brain fog, mouth sores. But abiut 4 years ago I began to get hives all over my body. This lasted for months. I even had facial swelling etc.

The hives were flared up following a miscarriage in 2018.

Fast forward to April 2023. The hives start again.. headaches and bone pain there are other symptoms to and have been over the years

I started researching after no allergy tests come back with anything and I'm convinced it's Lupus now

I'm due back at the Dr's next week what should I be pushing for? Another ANA test I can't believe it was that high and no one done anytying 9 years ago.

I feel like I've had a cloud over me at times the last few years. Just want answers

[JCM1992]

Bumping xx

[Chris21 in reply to JCM1992]

Hi JMC, were you given a diagnosis of something at the beginning after seeing a rheumatologist? Lupus can take years of various ailments to finally be diagnosed. There are also lot of auto immune diseases that could be the cause. Tell the GP your thoughts and ask them, if they think you could have some kind of auto immune going on. Hopefully that will lead to correct bloods being taken and where to go from there.

[JenniferW]

Hi JCM

There are a lot of overlapping auto-immune conditions, so maybe rather than pushing for testing specific to lupus, perhaps it would be better to tell the GP your symptoms and ask if they can retest for auto-immune conditions generally. That leaves the GP more room to think, they can get a bit grumpy if you tell them you think it's a specific condition, even though in your case you've got a good reason to.

Push the fact that you are in pain and that it's been nine years.

Best of luck

Jenny

[michaellasmith Administrator]

Good afternoon JCM1992,

It is good to see you are doing some research into your symptoms and that you have an appointment coming up to investigate. We always advise discussing any new or persistent symptoms with your consultant or Rheumatologist. Below, I have included a link to a blog article that you might find useful before your appointment:

lupusuk.org.uk/getting-the-...

I have also attached two publications from our website that you might also find useful:

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/wp-content/u...

Warmest regards,

Michaella 😊