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So, MNers think I need a referral, my gp today thought I "just need some steroid cream"..mmmm...
so after the helpful (and lets face it people agreeing with me) answers yesterday here, I went to the gp with my blood results and my symptoms.
He felt that I was just "sensitive" and that I need to live with it. There is no reason why I have suddenly got such awful fatigue, muscle and joint pain (constant), the butterfly shape of red reactive skin across the bridge of my nose, my cheeks, the rash that flares up all over when I I get really stressed or have a virus.. etc etc.. OMG I'm so sick of being me!! So sick of being sick and tired [grim]
So, my ANA result is apparently completely inconsequential, although it is 160 for both speckled and homoegeneous(I know that's wrong, I'm too cross to go back and work out the right sp!), he would need it to be over 2000 before he took it as relevant...????
Fortunately I'm too knackered to get too cross, but I am very sad about it.
Am I going to have to be on antidepressants just keep me from being desolate about being sick?
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Thanks RP - so you think it's worth persevering? I've had so many weird things over the years I really worry that I'm turning into a pain, but apparently the fact that I had ME for 7 yrs 20 years ago and my dad had dermatomyositis is not unconnected...
I suppose I could go to another gp in the practice and ask for a referral, but these previous notes will now be there. I might try the photo thing...
Oh, and I'd much rather be a sensitive hypochondriac than have lupus so I'm not sure I want the answer... does that make sense? Sounds really unpleasant.
Really, that seems a common consequence of asking for help on here. After my thread on Sunday night, MN is worried I'm about to drop dead of a hypoglycaemic coma and yet my GP and the practice nurse just think it's 'all just one of those things'.
I think you're very wise in saying that it all depends whether or not you want a diagnosis. I suppose it depends what treatment you would receive for lupus, and to what extent it would help. Withour knowing more of your (I'm guessing quite complicated) history and symptoms it's probably hard for us to know. But knowing MN, there may be someone eminently knowledgable about to pop along to answer all your questions!
Ignore the GP and continue to fight for a proper assessment and diagnosis. My GP has failed/misdiagnosed me on numerous occasions and there was one poster on here the other day who's GP hadn't even heard of interstitial cystitis!
They're not as well educated as people think they are Neither are the nurses, and I'm a nurse
Any chance of you going private?
Don't let them fob you off with antidepressants. They prescribe these too easily imo.
I have no expertise but agree with Rabbitpie about keeping a diary/list and photoes. Then choose your gp wisely - a GP who will listen. Autoimmune disorders are so complex they do seem to take ages to diagnose. In the meantime do as much as you an to get healthy bearing in mind that you may have a chronic autoimmune disorder. I know it is hard when you do not know exactly the what is! Pace yourself and eat well.
I've had a bit of a think, and I feel that, given the long term results of lupus (or any similar illness) being left untreated can be so grave, I'd rather find out. I'm very bad at trusting my own judgement, but if I was someone else I would think they were ill.
it's easier here, because it's all billable (GP, consultant, everyone) so there's no question of whether you're wasting their resources. They do not have a finite budget for referrals for example... I would pay for the visit to the consultant come what may (whether that's cash, health insurance or government help because of means testing), I'm in Oz btw.
So, I'll go back to the doctor from the health centre who originally asked for the tests, because whilst that's not my normal surgery, she was very interested in sorting things out and had no hesistation in referring me left, right and chelsea for all sorts of things. Maybe I should take her up on that.
Thanks for being a sounding board (that talks back!), it really has helped me clarify my thoughts.
Please go and see another GP. My mum had similar symptoms for 25 years and her GP just reached for the prescription pad for anti-depressants. Then she got a new GP who ordered tests positive ANA, speckled homogenous pattern and referred her to a rheumatologist. She was diagnosed with Mixed Connective Tissue disease, which then developed to Sjogren's syndrome.
Because of her diagnosis when I developed similar signs I pushed really hard for bloods also speckled homogenous pattern ANA positive, I too have mixed connective tissue disease. I am still biphasic with MCTD and have times when I am fine and my ANA is negative, but the Rheumatologist says that when you are treated and well controlled this is normal. Though you can have active Sjogren's and a negative ANA.
To me your symptoms fit more with MCTD or Sjogren's than Lupus.
Yes, Sjogren's was what came up when I googled... will look at MCATD. Can you explain "biphasic" in this context? and what do you do, eat, how do you live to keep it at bay? Are there things you can do or does it just depend on the drugs? Many thanks....
That sounds a very sensible approach. The GP that ordered the tests must have a reason and would probably like to follow up the results - it is more helpful for you in getting to the bottom of it if the dr is interested already.
You know your body and if you know sopmething different is going on then trust your own knowledge and persist.
The problem with asking for help on MN is you get lots of misdiagnosis, and get ideas into your head that you have certain things wrong with you and they are completely off the mark. (There is also excellent and advise and a lot of great support so I am not complaining)
I personally would go back and ask for further tests, evaluations, check-ups until I had a conclusion.
I gave up pushing when I had problems previously and now I have cancer. Whether it could have been preventable I dont know, but signs and symptons were there a long time ago, and despite lots of tests, they didnt do tests that would have identified waht is wrong with me now.
There are hundreds of different blood tests alone so they do need a vague idea of what track to follow.
I also agree about diaries and photos. I do this and they have been invaluable.
I do hate that VIRUS is the answer to everything.
I think you do have a lot of symtpns that need further investigation and anti depressents is not the answer. They might help you emotionally but not resolve the problem, unless it is caused by stress.
Be honest in your diary about your emotions, what you eat, how you feel, what you did, it will help you follow patterns and trends. Note rashes, headache, tiredness, aches etc.
Jackaroo, Just as a passing comment, I had similar symtons to what you describe and it was a serious allergy to medication. (caused me to be ill for weeks). So this is one of the reasons why I say you shouldnt just rely on guesses.
There are so so many different illnesses that have similar symptons.
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