Confused? - Should I get Tested?

[Davis3924]

Hey all!

I was wondering if I could ask for some opinions on my health, to see whether it is a good idea to get tested for Lupus.

Back in 2015, I fell ill whilst in Turkey, and I was diagnosed with ITP. Since 2016, I have thankfully been in remission.

Since then, I have suffered from really bad fatigue, to the point where some days, I could sleep all day. I’m just not as energetic as I used to be! Also, over the past week, I have been feeling really run down.

I’ve suffered with aching joints and bones for a while now. Frequent trips to the Dr, and they just say it’s ‘growing pain’.... I’m 25! The pain in my bones tends to be my thigh bones, and it feels like popping candy??

Over the past week, I have felt especially run down. I’ve had 5 random nosebleeds, along with masses of pain in my legs, wrists and fingers. I went to the doctors again, and they performed a standard blood tests.

The results show that everything is OK, and my platelet count is 267.

My concern is that I fell ill in Turkey, and they just wanted me well enough to fly home. When I got back to the UK, they almost took my word for it, and treated it as ITP.

Could it of been Lupus all along?

Thank you (and sorry for the essay post!)

[MissusTee]

Sounds more like fibromyalgia?

[whisperit]

Hello Davis3924

As you know, it's impossible to diagnose anything over the internet, and - other than the bleeding - the symptoms you describe are pretty generic. My suggestion would be to go to your clinician and put your question to them - why have they accepted the ITP diagnosis, and excluded SLE? The more specific and informed your questions, of course, the better. The LUK info leaflets on the "Home" page are a good overview x

[Davis3924 in reply to whisperit]

I fully understand that.

I saw the GP last night, and again they said “no, no I don’t think it is lupus”, again without any testing.

Instead, they said it was probably a viral infection, and I was told to come back in 2 weeks if symptoms persist.

I’ve had this for over a month now, with no flu like symptoms at all.

All they can say is my immune system is Ok, and my latest blood test looks OK.

Let’s see how I get on. I will certainly take a look at the leaflet again.

Thank you for your help 😊

[whisperit in reply to Davis3924]

yes, it's really hard to pin them down sometimes isn't it? And I always think of the questions I really want an answer to just after I've got home from the appointment x

[Oliveoi in reply to Davis3924]

Insist on a Lupus test

[Davis3924 in reply to Oliveoi]

I think I might have to!

I’ve been doing some more research, and I don’t think I have a viral infection, because in my latest blood test results, my white blood cell count is not elevated, and within the ‘normal’ range.

Also, the rash I have doesn’t just appear on my face. It appears on my ears, face neck and sometimes the top of my chest.

I’ve been feeling more stiff than sore.

I think it will be a case of getting another appointment with the GP, and demanding that I get tested for Lupus. If the results come back, it will put my mind at ease.

At the moment the GP says ‘it’s very easy to connect everything together, but I think we are looking at several different issues’, but in the next breath, tells me I have Parvovirus B19, and sends me on my way! 😂

[Oliveoi in reply to Davis3924]

Hi Davis,

That’s the only way to go. Keep in touch 👍😁