[w3nDy]

HI all new to this and not good at the spelling

ive been tested for lupus because i had a ANA 1:80 not sure if thats postive had the dry eye test to and doctor says was dry

ive been ill on and off for 3yrs now all sorts off things
been tested for ms all clear on mri apart from some spots on T2 but nothink to do with ms LP normal as well so really dont think i have ms
about a year ago went to lupus hospital had all bloods done with that all come back normal at that time and the doctor asked me if ive been tested for HIV i cant see why as been in a long time trustfull relastionship and have three sons all healthy and never had a blood tranfusion but i did get tested for HIV just so doctors cant use that on me again

ive even gone done the pyclogical road and got dischaged as they didnt feel there was anythink wrong with me like that

so now been left on the door step and still no better

do i chase up getting tested for lupus again or as my test results come back normal before when tested do i just carry on with out the help

i shocked even the best hospital for lupus the doctor i was seeing did what he did so is there no hope for me

really sorry to moan just feel lost with it all

 

[Katharine]

Hello and welcome,

An ANA of 1:80 is not high enough in itself to suggest lupus as there can be many reasons for an ANA of that level.

If it were higher they would then run other tests which are more lupus specific. ANA is basically a screening test and can come back positive for many auto-immune disorders.

Very dry eyes are more specific to Sjorgens syndrome than lupus though lupus patients often suffer from them too to an extent or can have lupus and sjorgens.

What other symptoms do you have? If I understand correctly you have seen a rheumatologist (sorry I must be foggy tonight..)?

As to whether you just give up...well it's simple. Do you know that how you feel is not normal for you? The answer is probably yes. If it is yes then you have to fight your corner, you can't give up but diagnosis for any auto-immune disease can be very hard to get as they are so complex.

Do you have any skin involvement, rashes etc? It might be worth asking for a referral to a dermy for a skin biopsy. There is also a biopsy that can confirm sjorgens syndrome. A skin biopsy can aid diagnosis when bloods are not conclusive enough.

Have you been put on any treatment at all?

bye for now,
Katharine

 

[w3nDy]

thank you for takeing the time in reading and replying
yeah my ANA is low and some were i read can even be classed as neg

syptoms ive had leg problems swelling acheing pain and neck and back
tremors in right arm tired dry mouth eyes and now nose ulcers nose and mouth tender body head aches a red purplelish rash on lower legs shines but was out in the sun never had it before but i know body change over the year

nope i know my body not right my mum of 57 yrs come to stay and we did alot and as the day went on my legs got so bad i couldnt hardly walk it was like my top half going faster than my legs would go hubby said i looked like a robort nearly fell over cos i laughing and i asked my mum if she felt tired and she had done everythink i had and she had no problems i am 33yrs old

i get alot of pain on my right side but had scan and wee test kidneys all normal even tho i went when the pain had gone lol

loads of other suff but your get bored lol

never had and rash on face

never been on any meds i hate takeing tabs or any meds stupied i know but i cant swolle them always feel like there got stuck lol

Hello and welcome


An ANA of 1:80 is not high enough in itself to suggest lupus as there can be many reasons for an ANA of that level.

If it were higher they would then run other tests which are more lupus specific. ANA is basically a screening test and can come back positive for many auto-immune disorders.

Very dry eyes are more specific to Sjorgens syndrome than lupus though lupus patients often suffer from them too to an extent or can have lupus and sjorgens.

What other symptoms do you have? If I understand correctly you have seen a rheumatologist (sorry I must be foggy tonight..)?

As to whether you just give up...well it's simple. Do you know that how you feel is not normal for you? The answer is probably yes. If it is yes then you have to fight your corner, you can't give up but diagnosis for any auto-immune disease can be very hard to get as they are so complex.

Do you have any skin involvement, rashes etc? It might be worth asking for a referral to a dermy for a skin biopsy. There is also a biopsy that can confirm sjorgens syndrome. A skin biopsy can aid diagnosis when bloods are not conclusive enough.

Have you been put on any treatment at all?

bye for now,
Katharine

 

[LolaLola]

Well In your shoes I would not give up. But I do know how hard it can be!!!!
I had endless trouble locally and ended up seeing Dr. D'Cruz first privately, then NHS. I would thoroughly recommend him. Like you my symptoms were much worse on Right side. You were most co operative to have an HIV test, that is heavy thing to put on you.

My bloods were not positive for years, (they were eventually) but it was not an issue with Dr. D'C. He started me on treatment anyway.
x Lola

 

[w3nDy]

Thank You Hugzzzzzzzzz

thank for the reply and takeing everythink you both have said

i rang up about going private to see Dr. D'Cruz and i feel even if he tells me 100% its not lupus its money well spent least i will know that i dont have ms or lupus and maybe i never know what its is but least i know what it isnt lol if that make sence i thank you all so much for all the info its helped me so much shame doctors cant be like the ppl in the forum hehe

 

[LolaLola]

Well Done, You won't be sorry. Dr. D'c is excellent.
x Lola