Newbie

[abt84]

Hi! I’m new here and undiagnosed...

Background - I had a baby 16 months ago (simple pregnancy, quick labour, placenta removal op after) and have had so many issues since then.

A&E twice with extreme pains in stomach (epiploic apendigitis with extreme IBS and reflux diagnosed - this was a joke! I couldn’t even pick my daughter up and was vomiting loads), had a spell over the summer for 7 weeks and then again early autumn for 3 weeks with terrible symptoms - extreme fatigue, joint pains (in wrists, ankles, knees and legs), weakness all over (hard to even sit up and would spend afternoons lying on the playroom floor), headaches, dizziness, eyes not focusing and fluttering, tingling legs, muscle aches (sometimes feels like repetitive strain, others like a dead arm/leg full ache)... to name a few!

Feel ok at the moment but have ‘flare ups’ here and there (good days/bad days) rather than a long spell like last year.

Long term problems of IBS, reflux and fainting.

Blood work - 2 x positive ANA’s, excelerated ACE levels and low Vitamin D.

Seen a neurologist and had an MRI which has ruled out Multiple Sclerosis (2 family members have it). Neuro thinks it could be lupus and so I am now waiting for a referral to a rheumatologist (no appointment through yet, so guessing it’ll be about 6 months away)...

Anyway, wanted to say ‘hi’! To everyone and glad to have found this group! I have already read some posts that have been useful! So thank you!

[Lisalou19]

All my issues started after child birth 14 years ago, then I gave birth again 4 years ago and the illness has progressed to the point of becoming unliveable

Definitely think child birth can trigger off the immune system with all those hormones increasing!!!!

[Curly1430 in reply to Lisalou19]

Well ladies if it was childbirth I’d be loaded coz I’m a bloke lol 😂 mine triggered with ear infection for holiday in Turkey abt84 my symptoms are near enough same as yours and iv been diagnosed with behcets syndrome which if you look up is very similar to lupus I find that sometimes this site is better knowledge than a gp give you x

[Lisalou19 in reply to Curly1430]

That’s something I’ve never heard off!!! How was you diagnosed with this? And do you get persistent rashes? I’ve got to the point whereby I am open to anything , I just want a diagnosis to try and live a better life!! I will certainly read about this thank you for sharing. What medication do you take? X

[abt84 in reply to Curly1430]

Ooo never heard of that one. I will do some googling!

I hope you are doing ok. And thanks for the teply

[Paul_Howard Partner LUPUS UK]

Hi abt84 ,

Good luck with your rheumatology appointment when you have it. If you'd like any tips on preparing for it we have a blog article which you may find helpful here - lupusuk.org.uk/getting-the-...

If you need any more information about lupus and LUPUS UK, we have a free pack which you can request and download from our website at lupusuk.org.uk/request-info...