are there any real doctors out there that can help?

[letslaugh63]

doctor told me yesterday bloods came back normal except 1 which showed body fighting something,had melt down in doctors this morning(very embarressing and has put me in a right downer)as yet another sympton has appeared but this morn i was in agony .my boobs so tender even when walking and the shooting pains when they come are agonising.after melt down asked bout blood results he told me all normal what the f- - k is going on all i want is some answers and they confusing me even more really really had enough cant do this anymore

[Purpletop]

So what did they say when you asked them about the cause of symptoms? Remind the doctors that you are not there for them to interpret the test results but to resolve your soupy proms, so what are they going to do about it.

Have you asked to be referred to a rheumatologist? If not, go back to your GP and say that you appreciate that your blood tests appear normal but nevertheless your symptoms are still concerning you and you would like to be referred to a rheumatologist, specifically Dr x (decide in advance who you would want to be referred to). If you can email the surgery, even better, written requests are more difficult to be ignored.

[letslaugh63]

yes i have did demand to see rhuematologist but they always refer back to blood tests being neg. i'm so ashamed to admit but i swore at him basically because he said he understood how i felt and that really pissed me off i also wished he could be in my body for just 1 day.he now putting me as urgent to see a rhuematologist.I was lucky really as he could've struck me off for telling him to f- - k off

[letslaugh63]

forgot to say it was two different doctors i saw but from the same surgery with same results in front of them.one of them needs 2 go 2 specsavers and i can get him a quick app as my son works there

[roobarb]

This is so frustrating letslaugh, but hopefully the rhuemy will be more helpful. I was in the same position of being fobbed off by my GP for years, until I happened to see a locum who did the right tests & referred me to a rhuemy. I'm still trying to get my head around all the blood tests, ever changing symptom etc etc. But the website & books from lupus UK & St Thomas' lupus trust are written in plain English, so should help you on your journey to a diagnosis & treatment.

It might be worth reading up on lupus & hormones to try & understand your latest symptoms. Also search this site for earlier posts on the same thing. I used to get very poorly pre-menstrually, & during periods, with sore boobs, heavy periods, extreme fatigue & joint pain, to name a few. Also, might be worth listening to the jeremy vine show Radio 2, Monday 7th jan. There was a good piece abut lupus, & you can still listen on iplayer. It starts at 1hour 8mins. X

Hope you get your rhuemy appointment very soon. X

[letslaugh63 in reply to roobarb]

hi roobarb ty for i will look up books.i can't be hormonal as don't have any,had full hystorectomy due to endrometrosis 1993 never took to h r t when i moved from scotland to england doctors took me off it as said i was heading towards stroke(numbness, pins and needles left side face/head which i get now) that was 1998 but i do agree with you with symptons(hormonal) as some feel remarkably close to endro x

[Sher78]

Negative blood results mean bollock all. I have just had a very savage 2 year flare - with negative bloods, DESPITE being diagnosed over 18 years ago lol! When will these medics get their heads out of their arses & chuffing well do a bit of bloody research? Makes me sick 2 think of all the money they r on when some of them I wouldn't even entrust the health of a bug 2!

Must admit, the boob pain, I have noticed that despite never suffering with period pains b4, I tend 2 get when I'm due on now & it's bloody excruciating. I end up laid up now when I'm due on as I start throwing up & getting really bad cramps etc Weird how things can just suddenly change, as if we don't already have enough crap 2 deal with! Can u work out if it co-incides with anything like that?

Don't blame u 4 swearing at u're doc, it IS frustrating. The amount of rows I've had with my rheumy, I'm sure he takes Prozac when he's due 2 c me now lol!

[letslaugh63 in reply to Sher78]

hi sher78 i have had probs for long time it's only because i basically have all symptons together now that i made the connection(autoimmune) if that makes sense.while in hosp in spain with u c d /polyps,sickness and lots of pain i kept asking docs if it was endrometriosis as b4 i got really ill that's how it felt in so many ways i was told no way bcos of hystorectomy.last year in hosp here(u.k) for same thing except ct scan showed ucd and bowel was severly swollen but colonoscopy ruled out ucd (they did remove polyps)to cut to chase went back for results and asked again about endro because of symptoms b4 ending up in hosp they said not possible. also said it was IBS(even tho ct scanned showed 3 lessions on liver) in other words they didn't have a clue i'm telling u all of this not because i want to bore the tits off u but because i believe 100 percent they related to is happening to me.look up lupus and endrometrosis on google x

[Sher78]

so many things can b linked 2 lupus & vice versa, & lupus can mimic so many different things, that's why it's such a sod 2 diagnose & there is no specific test that says 'Yes, u have lupus'.

More women than men have lupus (kinda tells u there's more than likely a hormonal link). There was always a question whether or not I had PID & Endrometriosis b4 I was diagnosed (turns out most of the stomach problems I had were mainly due 2 having large clots wrapped around my bowel but there u go!) & lupus will attack anything & everything in u're body, depending on the whether it's systemic lupus or not. I think much of the time the hardest part is getting a firm diagnosis & trying 2 convince the docs that all of the symptoms r real :0/ The thing is we don't all have exactly the same symptoms & it can affect every1 differently, there r no 'ste rules' 4 many autoimmune diseases. I really do feel 4 u my lovely, but don't b fobbed off by what the medics say, u have 2 keep pushing 4 answers.

[letslaugh63 in reply to Sher78]

stupid question but is it normal for symptons to get worse at night

[Sher78 in reply to letslaugh63]

Not a stupid question. I tend 2 get more muscle spasms & restless legs something chronic at nite, not EVERY night but I guess u would notice more symptoms when u're body's supposedly 'at rest'. We're all different but apart from that & being a bit more achy after the day, mine generally stay the same 24/7.

[Tigerlily4]

If they absolutely refuse to refer you to a Rheumatologist, you can always go see one privately. Wish I had known this back in the day. It will cost around £150 but may be money well spent. If not SLE, it may be a similar condition and a Rheumy is the best person to think it through. I had several blood tests commissioned by my GP over the years which all returned negative. He therefore insisted I was neurotic and imagining my symptoms - for almost a DECADE - before I was finally referred and received a diagnosis. This is quite a common scenario with GPs (and especially with lupus) and utterly humiliating so I can understand why you swore at him, lol! I would have liked to swear at mine too but unfortunately our sons were in the same class at school Best to retain your dignity though. I hope it's not SLE but also that you get a diagnosis and, more importantly, some treatment soon. Good luck!

[letslaugh63 in reply to Tigerlily4]

ty tigerlily but i have been refered now got letter next day(doc put through as urgent) which u book app yourself on inter net so waiting for app.i seriously think doctors don't want to send people for test or to specialist because of costs to surgeries apparently they have set bugdets for nhs (which don't surprise me in the slightest)but not sure.he didn't even think to examine me.i went back yesterday and saw lady doctor as i wanted to rule out anything sinister and boobs were the same(5days well now 6)after full examination she said pain coming from breast muscle but i still don't know if this is relevant to lupus or something else x