I was told I may have SLE in 2007,then told I dont! Years of being unwell, and now my immunologist says I may have it afterall.

[Misty007]

I have my recent results from blood tests etc and I cant make sense of any of it so any advice would be helpful.

[pattismith]

What do the blood tests say ?

[Misty007 in reply to pattismith]

I know that no-one can help diagnose from what I have put here... just feeling fed up today and any advice/knowledge would be great :-).

[Misty007]

Thank you for a response :-). HB 15.6, WCC 7.21, plt 170, neut 5.12, lymph 1.66, Na 142, K3.2, Ur 3.7, Cr 60, CRP 0.9, CK 70, bil 13, ALT 13, ALP 106, alb 42, adj Ca 2.22, phos 0.76, B12 205, ferritin 25.5, folate 6.5, TSH, 1.30, T4 11.8, T3 4.7, iron 31.7, transferrin 2.86, transferrin sat 50%, vitamin d3 36.5 (insufficient and have previsouly had a count of 26 deficient), ANA - negative (which I understand is good), TPO negative, awaiting adrenal test results as previsouly have been low. IgG 8.87, IgA 1.65, Igm 1.12, C3 75.8 and C4 19.3.

I have skin flairs and hyperpigmentation of my cheeks and forhead that spreads and darkens in the sun. I have Raynauds, fatigue, painful joints and muscles, chronic sinisitus etc. etc... I have been under investiation for years and getting more and more fatigued. What do you think?

[Misty007]

Oh i forgot to mention, I also have hypermobility syndrome, proximal muscle weakness and tremors too.

[pattismith]

What kind of consultant have you seen, have they done urine sample yet ?

[Misty007]

I see an Immunologist and am being referred to a colleague as she thinks that I am developing a lupus like autoimmune disease but didnt say what! I have in the past been told I may have SLE but then told not and now again going through it all. I havent dont a urine sample yet. I also see and edocrinolgist, he was the chap that Diagnosed re vitamin d deficiency back in 2010. What would a urine sample show? Thank you for asking

[pattismith]

If there is a doubt that you have Lupus, a routine urine sample checks for any protein, try writing a list of questions you want to ask , that way the const will explain things you don't understand, also make notes of his answers so you can look again when you get home. Take the list of results you have that you don't understand and ask them to explain them to you, its their job , you're just like a customer, they always get answers to their queries and don't forget you pay the Drs wages at the end of the day, so get your money's worth !

[Misty007 in reply to pattismith]

Thank you for your help with this. I had a urine test at endocrinology in 2010 which showed protein, white blood and red blood cells in my urine... Is that what they should be looking at re immunology?

[pattismith]

Depending one the levels of protein, they sometimes send a sample to the labs for futher testing , could be an indication of a flare ?

[Misty007]

Possibly although I really do not know... I get right kidney pain and thats why they tested then. Now i get pain in both kidneys a bit like a pinching feeling and ache, is that part of a flare?

[CMac13]

Hi there, I'm keeping this short, as not sure my replies are received! (I'm new to the site). Just want to say that, as I'm sure u're aware, it can easily take years of indecisive doctors to diagnosis SLE, or it's many 'friends'. Everyone on this site will have a different story & sometimes, huge levels of frustration as diagnosis isn't forthcoming or it's changed by each different doctor/ specialist.. So don't give up hope or lose heart- it IS like being in limbo when u think that each appt will finally answer all your questions & give u a firm diagnosis, then a clear plan of action & maybe even a vague prognosis! U will find an answer to ur problems & please never feel that u're on ur own. Take Care C