Not yet diagnosed...

[suzannejayne]

Hi all, this is my first post, its a bit long but please bear with me

11 years ago I was diagnosed with fibromyalgia but I think I was misdiagnosed. I recently acquired all my blood test results at the time and it showed positive for ANA and my CPK level was 266. I was meant to have another blood test the next year but I never got the notification. Recently I had a routine blood test which wasn't tested for ANA but my Monocyte and Eosinophil levels were above high.

I am going to speak to my GP about this next week to request another blood test to monitor my ANA however these are my symptoms:

Chronic muscle / joint pain. Headaches.

Fatigue.

I get an itchy rash over both cheeks when I am in the sun and I suffer from extreme sweating in heat which causes me to feel really light headed, sometimes unbearable dizzy. This also happens if I've had a hot shower or bath and I need to lie down straight after. I have degenerative discs well also arthritis. my muscles and joints swell often.

Also I think I have POTS syndrome. If you got this far, thanks for reading. lol

[suzannejayne]

I ran out of word count lol I also have restless leg syndrome and I cannot walk far due to the pain and spinal problems. I have a rheumatology appointment next week although I am 90 per cent sure its lupus.

[ER66 in reply to suzannejayne]

Sorry to hear your story. Keep me posted on your doctors appt. I feel like I'm fading ....with lots of symptoms but no actual definite diagnosis either. I'm not ticking enough or the right boxes. Hmmm...

[suzannejayne in reply to ER66]

Hi, thanks for your reply

It is frustrating isn't it, everything takes so long and I'm like you, I don't think I tick enough boxes which then leaves us wondering what is it. I will update on my appointment thanks, have you seen a consultant yet?

[suzannejayne]

Hi and thanks for replying. I've also been reading about POTS and the links with various illness. There does seem to be a link between lupus and POTS.

I have lots of notes lol I just hope he reads them all thanks.

[Paul_Howard Partner LUPUS UK]

Hi suzannejayne ,

Welcome to the LUPUS UK community forum.

Good luck with your GP appointment and follow-up tests. It may be worth discussing the possibility of a referral to a rheumatologist for further investigations into lupus. Let us know how you get on.

If you'd like more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

[suzannejayne in reply to Paul_Howard]

Hi Paul I have an appointment with my rheumatologist on Wednesday (for cubital tunnel syndrome) so I plan on mentioning it to him rather than go through my GP again as it can take some time. Thanks for the link

Can I just ask, although my ANA test was positive, it was negative for ENA. Would Lupus have to show a positive on ENA also?

Many thanks.

[Paul_Howard Partner LUPUS UK in reply to suzannejayne]

Hi suzannejayne ,

I hope your appointment with the rheumatologist goes well tomorrow. Let us know how you get on.

ENA (extractable nuclear antigens) is a test that looks for a battery of antibodies which are found in lupus or conditions that commonly overlap with lupus such as Sjogrens syndrome and mixed connective tissue disease (MCTD). I do not believe that a positive result for any of these antibodies is required for a clinical diagnosis of lupus.

[suzannejayne in reply to Paul_Howard]

Thanks Paul, I'll let you know how I get on