confused. GP will not refer me to rheumy because of negative Ana

hi

my name is Tracy and i am 30yrs old

a few weeks ago i asked my GP about lupus .he said its hard to diagnose and does not always show up on Ana and and gave the impression that blood test don't matter.as you can be diagnosed without them.

he said he would test me for a few things and i could go back if they showed nothing.

test i had

Ana

full blood count

thyroid

sed rate

corrected calcium

all the test came back OK so i went back and asked to be referred to a rheumy.

same GP refused point blank saying he could not do that because i had negative Ana.i was taken a back by that and confused .i said you told me last time lupus does not always show up on blood test.

he then said it was because the other blood test had come back OK.and i don't have muscle pain every day or had any infections

i have a lot of the symptoms for lupus .all of which are on my medical records.i don't have all of them on a daily basis .i feel Ive been having flares where i get back spasm and hip pain. and hot sensation on and off in arch of foot

Ive had a toenail infection in both big toenails for 6 years which has not responded to any treatment . big toenails growing back in multi layers.other nails not effected

i said what if i go private. Ive heard there is a lupus hospital in London . GP said if you want to waste your money than go

i am at a loss in what to do next. has anyone been diagnosed with lupus without having positive blood test of the above?

don't know if to see another nhs GP or go private. but have no idea how much it would be to go private

[catb18]

Hi hun,may i ask do any of your family have lupus x

[Hidden in reply to catb18]

hi

my auntie has lupus on my dads side

my mum is adopted so we don't know her family history

my symptoms are

headache

rash on across face.arms and legs when in contact with sun

recurring mouth ulcers

nose sores

irregular periods

change in bowl habits .constipation or loose stools

external piles

not being able to stay asleep at night

sensitive to bright lights

heart palpitations

dry mouth/ eyes

numb feeling in shoulder blade( not every day)

back spasm and hip pain (not every day)

on going toe nail infection

fingers starting to feel stiff to bend

think problem in past is GP just looking at one symptom at a time. and not the whole picture

wanted to see rheumy to see what they think

[catb18]

Go back to your gp and tell him again about your symptoms and your aunty,i,m showing some of the same symptoms as my mum did and because mum had lupus my gp referred me to a rheumatologist but i did have to see another gp to get my referral,insist you need a rheumatologist,let me know how you get on hun x

[Hidden in reply to catb18]

hi catb18

thanks for replying. i have made an appointment with a different GP today.can not get in until 30Th November. i need to be more assertive and insist on seeing a rheumatologist.i will let you know how i get on.

[Skid]

Hi Tracy I agree with catb18 go back to you doc`s or even ask to see another, you have to keep on pestering them. It took me 5 years of going back and forth seeing seeing different doc`s and specalist no end of test, xrays and muscle biopsy. I was one of the lucky ones who happen to see the right consultant at the right time who had lupus as one of his specialities so he diagnosed me straight away. They do make you feel like a hypochondriac but we know our own bodies and know when something is not right they make it so difficult to get it across to them. I really hope you get some sort of result soon .Keep at it and persivere. Good luck and take care there is always someone on this site to listen and give advice, I have found it soooo helpful with all my probs and everyone is so kind and understanding. Shame doc`s can`t be a bit more like it. Regards Suzanne

[Hidden in reply to Skid]

hi suzanne

thank you for your kind messages of support. and also to catb18 .i went and made an appointment with another GP.its on the 30Th November.

i was upset after seeing the last GP.but am now fizzing about his attitude.on the day of the appointment i had to crawl down to the doctors because my back had gone into spasm for no reason .it had taken me 1hr to get out of bed.a few days leading up to the spasm i had people ask me if i was OK because i look white. this always makes me lol as i am white with fair skin . i think they mean that i have no colour in my face.

yep doctors do have a habit of making you feel like an hypochondriac and for making you feel that your wasting there time and you should not keep going back

it must have been a long 5 years for you.i hope your now getting the right treatment

my fighting spirit has come racing back to the surface so i will keep on pestering gps and will let you know how i get on

this site is fab. its good to be able to talk to people who understand .as i now no longer tell my boyfriend,family or friends when i am going doctors as there fed up with hearing me say i don't feel well

[Hidden]

Thanks .i will go back .but think i will see another gp

[Skid]

Hi again , Good luck and keep at them. Let us know how you get on.

Take care and keep your chin up !!.

Suzanne

[Hidden in reply to Skid]

hi Suzanne

just thought i would let you know how i got on seeing another GP

he does not think i have lupus .

but wants me to have a MRI to check for pituitary tumors and signs of ms

prolactin been elevated for years .but have always had GPS shrug there shoulders and say that's nothing

will wait for results then take things from there

hope your doing OK

[catb18]

Hi tracy4,my mum saw quite a few gps before she got referred because they kept sending her away,telling her there was nothing wrong with her,many a times she came home in tears.Good luck hun x

[Hidden in reply to catb18]

hi catb18

just a quick update on how things are going

went to see another GP .but he does not think i would have lupus

he did however agree to a MRI scan of my head .to check for pituitary tumors and signs of ms . have been having elevated prolactin levels in blood tests for years. but have always been told that's nothing by GPS

not sure if anything will show up on MRI but might as well have scan and take it from there

hope your doing ok

[Cheley]

Hi you are entitled to a second opinion re your Dr ....Don't be fobbed off keep strong and persist in what your doing I had a blood test for lupus 5yrs back came back negative Since then I've had more symptoms ..I also have Fm ...My bladder is shot as the muscle contracts continually having Botox for that loosing my hair pain aches in joints etc ..Now for the past three months I've been experiencing nasty white mouth ulcers on my tounge and inside my mouth very sore indeed So I'm going to go back to my dr (different one I may add !) and request another lupus test ...Please keep us posted and good luck with this 😊

[Muff20]

Hi, it takes so long to get Drs to listen when you have these problems. They struggle to know what to do or who to send you to with no blood test evidence. It's taken me 7 years, 3 different rhuematology consultants and I am still at the stage Drs know there is a problem but still not sure which conditions. Along with lupus type condition I have thyroid problems and I can assure you that is just as difficult to get that diagnosed too! When you say you had a Thyroid check I am assuming just your TSH as that is what most Drs do. Unfortunately that on its own doesn't tell Drs much at all, I know from first hand experience. You need a full Thyroid panel including antibodies. Trying to get Drs to do that is almost impossible. Do you have family members with thyroid problems? I had to pay privately to get mine checked, and guess what? I have a thyroid problem and now travel 2 hours to see a consultant as my hospital wouldn't even test me even with family history.Do you get copies of your blood test results? I would do that first so you can check results yourself. Drs can miss things. They are very good at saying all normal when you're on a border line. I would be interested to know what your TSH levels are🤔.

You just have to keep going if you feel unwell go back to the drs. Maybe see a different GP if you have a choice.

Good luck.