Feeling Lost

[Dreamliquid]

Hi new here. Been experiencing symptoms of lupus for a while (joint pain, hair loss, chest pain, scaly rashes and fatigue since teens) and after a recent stay in a&e for chest pain and tachycardia with no apparent cause I thought I should really get this checked out. Had blood work done but my only positive was the ANA and CRP. The DNA AB, ESR, ENA AB and RF were "Satisfactory". So confused and scared. Please help guys ❤

[miccika1]

What other autoimmune antibodies did you do? You need to do the whole panel to find out witch exact autoantibody causes you ANA to be elevated. Did they provide any breakdown of different types of ENA so you can see if they tested the whole panel or just some? You might not have lupus, but there are a bunch of similar autoimmune conditions that is raising your ANA.

[Dreamliquid in reply to miccika1]

Hi miccika1 thanks for reply.

I Updated with Photo of bloodwork.

I'm going to push for more bloodwork and a referral to a rheumatologist but I dont think theres any specialists in northamptonshire

The GP is content to pain manage me if these results came back with nothing, should I request by results to analyse further?

[Krazykat26 in reply to Dreamliquid]

Hi Dreamliquid

Warm welcome to you 💐

I live in Northamptonshire n there is a specialist rheumatologist based at Woodlands Hospital in Kettering..he has specialist knowledge about lupus but he sees patients privately mainly although I do believe that he sees NHS patients. I have cutaneous lupus so dermatology is the specialism for me so I don't have any personal experience of this doctor but his name is Dr Kuttikat. There's also a Dr Barami at Kettering (rheumatologist) he saw my daughter last year n he was very thorough.

Kat 😽😽 xx

[Dreamliquid in reply to Krazykat26]

Thank you Kat it's nice to have some names now. My GP doesn't like to refer but I will do my best to ask.

[miccika1 in reply to Dreamliquid]

I see, but it will be good to see what exactly they tested. For example ENA panel has 8 or more tests for specific autoantibodies. Go to a rheumatologist asap so they could further assist you. Hope you could get diagnosis and medication asap. There are plenty of good meds that work well on a lot of people so hope you will respond well once you start taking them. You obviously have some autoimmune condition, and most are treated the same so even you primary could prescribe some basic meds to help you and then your rheumatologist can help you with the correct cocktail. Different combinations work for different people. Maybe just one basic drug will be enough for you and if not they have you try additional once until you find a good combination.

[lupieibbie in reply to Dreamliquid]

Good idea to push for a referral to Rheumatology. With the best GO around, managing the pain may not get to the root of this. Good luck.

[lupieibbie in reply to lupieibbie]

Predictive text makes me weep, particularly when Lupus has hijacked my normal cognitive attention! Should be GP, not GO!

[Hidden]

Hi there. I completely relate to and understand how worried you are at the idea that your GP thinks they can manage your problems, based only on managing pain rather than finding and treating the underlying cause.

As your ANA is positive (and not everyone with rheumatic diseases even has this) and you are very symptomatic - I suggest you request to see a rheumatologist based on your symptoms, +ANA and raised CRP. This should be enough and you now have a name of a local rheumatologist to suggest as well.

As others here have said your symptoms could tie in with a number of autoimmune diseases not just Lupus - so try to keep an open mind. CRP is not usually raised in those with Lupus or Sjögren’s whereas it often is for those with RA, Vasculitis, Scleroderma and untreated thyroid diseases.

Also, I take it your GP has run other tests on you such as a full thyroid panel, Vitamin D and B12?

Mine never did when I was in the early stages of getting diagnosed (RA, then Sjögren’s and now overlap connective tissue disease plus long-standing hypothyroidism).

If your GP still refuses to refer you then point out that you are aware that most of these diseases can present in Seronegative form - particularly RA, PsA and Sjögren’s. So your +ANA, CRP and symptoms show that something systemic is occurring at least.

[Dreamliquid in reply to Hidden]

Hi Twitchytoes many thanks for the reply.

Yeah I have had my B12, Vitamin D, Thyroid and full blood count and nothing has come up on that if I'm aware other than a low vitamin D.

I have a big family history of thyroid issues and RA so it wouldnt be too surprising.

[Hidden in reply to Dreamliquid]

Well it sounds to me as if your GP should definitely be referring you on.

I have found that being maximally treated for Vit D deficiency (prescribed AdCal D3), taking soluble B12 and making sure I’m on a high enough dose of Levothyroxine - all helps to keep my RA symptoms and alopecia at bay - but not the rest unfortunately.

I strongly recommend that you get copies of all your blood results and learn the ranges and where your bloods fit within these. GPs have told me that my ANA or thyroid monitoring bloods were normal range - only for me to discover that they weren’t. You need to get printed copies of all of it and work it out for yourself.,