Kind of down at the moment: Having a hard time... - LUPUS UK

LUPUS UK

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Kind of down at the moment

Adevine profile image
6 Replies

Having a hard time getting diagnosed for lupus i explained to my gp about all my symptoms and he says he thinks i have lupus so was sent to rumi at my local hospital,

all i can say was very disapointed with the way he was i was asked a few questions the consultant was abrupt and rude and did not seem to care at all he did some blood tests but not the ones for finding out if you have lupus as he said he didnt think i had it and he got that from a 2 min chat pathetic if you ask me.

my symptoms are

rash across my checks that gets very painful can come at same time on both sides and looks like a copy of the other side or can also come one side then other.

back pain that tends to spasm randomly like someone grabbed my spine and then winded me, also get pain in my lung area of my back like they are inflamed.

feeling ill and always tierd and i get alot of colds and cannot get rid of them.

nausea+dizzy spells.

joint pain in arms fingers and knees and my ankles.they also swell up.

i also have alot of problems with my teeth they keep crumbling for no reason (i dont know if this has anything to do with lupus)

if anyone has had similer problems it would be great if you could let me know :)

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Adevine profile image
Adevine
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6 Replies
momo_special profile image
momo_special

The very nature of Lupus is that it gives vague symptoms that mimic other diseases so I'm surprised that a Rheumatologist was so flippant. Request a second opinion you are entitled to it and go back to your GP who agreed with you, don't stop often Lupus patients have to shout louder than normal to be heard. I was diagnosed with an inflamed liver, it was not connected but other tests were done and my antibodies were through the roof which prompted other tests and 6 months later it was confirmed... it was all a bit of an accident and I could've gone on for years. Good luck

Adevine profile image
Adevine

thank you for your reply yes i agree he should have not been like that with me and im in the process of getting a second opinion,

i have been dealing with these problems for along time so really want a result now for my own peace of mind more than out.

Kirstin profile image
Kirstin

Argh! Don't remind me. I came away from my first rheumy visit in tears because he was so dismissive.My liver stats were elevated, but instead of reading what GP had said and listening to symptoms, he accused me of lying about how much I drink and malingering! I asked for second opinion but that went on for a year before I got an appointment with a consultant who, like my GP, said straight away "it's Lupus". I'm still extremely angry with that first consultant and his attitude.

Keep pushing! Good luck.

Blimey you all sound like you went to my first consultant app. He said that I didnt have it and that just because my mum has it doesnt mean i would get it. He was quite rude! One blood test later showing a sky high ESR and ANA and DNA antibodies I get a letter from him inviting me to attend his clinic. Never got an apology though.

Good Luck :-)

Adevine profile image
Adevine

Im so glad to know im not the only one that has had a rude consultant.

what gets me we pay tax to keep them in a job so can they not be a little more supportive to there pataints.

Well gonna keep pushing for a result, my gp has me on plaquenil,anti inflamitorys,lanzoprazol for the acid i get,meticlopromide for the dizzy spells/nausua,to name a few they do help some my rash has calmed down alot on my face and when i get a flareup its not just as bad as it was.

im just worried when my GP retires(not too far away) i will have to start from scratch with a new one because a rheumy has not said i have lupus yet.

hels profile image
hels

hi well today i got taken to a&e i feel so stupid they treat u like crap im in agony i lost a baby at16 weeks had bloods done i have factor 5 leidan and mld lupas so they say the pain is shocking i cant stop crying all down neck back arms legs toes and fingers also chest pains they say its nothing to do with lupas i dont understand i feel also like im hitting a brick wall keep chin up xxx

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