wait until lupus flare to have Ana blood test - LUPUS UK

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wait until lupus flare to have Ana blood test

flint1 profile image
13 Replies

hi

does anyone know much about Ana blood test?

just asking because since 2005 i have been going to the doctors with a list of symptoms. all of which have been dismissed as just anxiety after blood test came back OK

prolactin elevated on a few test. told that's nothing

never had Ana or full blood count blood test

but i have always felt there more to it than that

i am 30yrs old with no children. never had any health problems

i am not on any medication

just come across lupus on the Internet. and think this may explain things

but wondering if your best waiting until your having what you think is a lupus flare before going to the doctor and asking for a Ana blood test?

would you only get a positive result if your having a flare when blood test is taken ?.or does it not matter?

my symptoms are

headache

feeling tired

hip pain that travels around to lower back

rash on face ,arms and legs when in contact with the sun. even after a shower/bath

change in bowl habits go between constipation or loose stools

external piles

heart palpitations

irregular periods (had always been regular as clock work)

nose bleeds

bleeding gums

in cold weather fingers feel like blocks of ice then start to tingle feel painful then turn red

even when not cold finger starting to feel stiff to bend

unable to stay asleep at night

night sweats

on going fungal infection in both big toe nails . tried different treatments.even painted stuff on from doctors every day for over a year.thought it had gone but its come back

i don't get all the symptoms every day. some i wont have for months then get pungent smell that kicks of nose bleeds and hip/back pain

makes me think that they might be flares

thanks for reading

any replies would be much appreciated

karen

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13 Replies
sasha12345 profile image
sasha12345

hi there l had a dna and ana when l went to hospital l did not have a lupus flare at time of going to hospital but the blood results came back positive l am on medication but still get flare ups .l had all the symptoms you had and still have a few now, never felt right for a long while.but when l do feel better it only lasts for a few days .l was told blood results can be negative but you can still have SLE

. . .

,

tintin49 profile image
tintin49

i am like sasha never had really bad symptoms tired achy but ana and other things tested positive for lupus. took plaqenil and am flaring forever

Coppernob profile image
Coppernob

As Sasha says, it's important not to rely soley on ANA and other antibody results - they come and go and 'do their own thing'. Also, have you been referred to a rheumatologist? GPs don't usually know much about lupus, Sjogren's, etc.

flint1 profile image
flint1

hi

coppermob i have never been referred to a rheumatologist

lupus has never been brought up by GPs.

i have only ever been told that it might be your thyroid.but because that's always been OK . was then told you must be stressed .have never been told that there can be other medical conditions that could be causing these symptoms.

i seem to be going around in circles. GPs keep saying well your had loads of blood test and there nothing wrong.some even turn there backs and say is that all.

i have been made to feel that i am wasting there time.and should not keep going back

i am going to make an appointment with my GP. i will make a list of all my symptoms and ask about lupus

i have made the decision that if i don't get taken seriously i will have to change practice

thanks for the replies

Adamine profile image
Adamine

OMG!!!

You sound just like me - I finally got a locum GP to listen who ran all the tests that finally showed I was ANA and Ro positive. BUT even then, not all the medics take me seriously... It's a most frustrating time...

This site if fab though - the best thing you can do is follow your instincts.... Thats what there for.

kx

flint1 profile image
flint1

hi adamine, sasha12345, tintin49,coppemo

i agree this is a fab site .

GPs in the past have tried to make me feel stupid because i dare question there diagnosis of your only got stress/anxiety

can not talk to my friends and family about this as they are sick and tired of hearing me say i don't feel right..

its good to know that i am not alone in feeling like this .

Tadenam profile image
Tadenam in reply to flint1

My experiences. Doctors said depression and anxiety family and friends thought i wanted attention or was lazy. And now after suffering for nearly 20 years i finally had my doctor run tests and i came back positive for lupus and polyarthritis. I feel your pain and frustration. Its not fair or right that when people are very sick they are diamissed because the illness cant be seen like a broken bone or something that they can see and understand.

Shann07 profile image
Shann07

Hi there, all of your symptoms sound exactly like mine, although i have never had nose bleeds. I was always complaining and moaning, my family thought i had depression, but i knew there was something seriously wrong. After 7 years i was eventually referred to a Rheummy & i was admitted to hosp before my app came through because undiagnosed lupus had attacked my heart & lungs, i had effusion & was transferred in cardiac ambulance to 3 different hospitals! Eventually got lupus diagnosis i was so glad i had diagnosis, my gp ignored me for years & was treating my lung pain as back pain & fobbing me off, i could have died! Dont give up ask your gp for referral to Rheummy, or go privately if u can afford it. Diagnosing does take a long time but its a real fight to get gps to take you seriously.xx

flint1 profile image
flint1 in reply to Shann07

hi

sophieh it must have been a very frightening time for you. hope your getting the right treatment now

after reading all of your replies .it sounds like you all have been down a very long road . firstly to be taken seriously and get a lupus diagnosis . secondly once diagnosed your still having to fight ,battle and push to receive the best treatment

i am going to make an appointment with the doc tomorrow. if i feel i am being fobbed off then i will look into going private

Frustrated_mom profile image
Frustrated_mom

I feel your pain nearly nine months now I've been back and forth to my GP and the hospital. I've swollen glans in my neck, behind my ear and even in my armpit. I've had exploding headaches. My joints are in agony and my legs are now shake. I've had pains in my chest since January. Rashes on my face arms and chest. Always exhausted. Night sweats. The list goes on now my doctor she really has been trying but it seems like when certain tests come back clear they forget about what your complaints are. It was only by chance I came across a photo of a lupus rash and realised it's the exact same as what's on my arm. My face only cleared a few days ago. But every symptom that was listed for lupus I seem to have. So I'm off to the doctor once again in the morning to see if I've even been tested for it if I haven't I'm not leaving till she does bloods. I really hope you get the answers your looking for I know how it feels to be constantly suffering and people treating you like a hypochondriac. Even my dad is starting to fob me off says my tiredness is down to looking after my son but I know in my gut something is wrong. Please update as to how you get on ill be thinking of you xxx

suzannejayne profile image
suzannejayne

Hiya, I went through lots and lots of tests, MRIs, DEXA scans .. the lot and finally they diagnosed me with fibromyalgia. However some years ago I tested positive for ANA and so I've been referred to a rheumatologist for further blood tests but I am aware that fibromyalgia and lupus can be connected.

Winniesue profile image
Winniesue

I would insist on blood work. your SED rate and CRP should show If you have any inflammation in your body.

Tzwifey99 profile image
Tzwifey99

Everyone is different but it definitely sounds like you have something going on. If you have lupus or another autoimmune disorder it will show up if your having a flare or not. God Bless

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