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hi all,

hope you are keeping well, feeling a little sorry for myself so apologies before you read on. :lol:

had my 2nd rheumy apt today and he said that all my test results came back negative (including my ana which was positive last time? (i know this should be a good thing right? ) but i still feel awful, exhausted, generally feeling ill and now making it worse that i have had the title of lupus taken away again and transferred into inflammatory arthritis disease. not that i ever wanted to have lupus but at least i felt a little more in control!

my rheumy said that there is definately something happening and i have symptoms so he is going to treat me and has started me on plaquenil, i now feel like i am going backwards and am more confused than ever! last time o saw him he was offering to introduce me to people with lupus and support groups etc.. and now i feel all alone again with no answers.

work is really not great either still and this is just adding more pressure as now i dont know whats wrong and dont know when i'll feel better! what to do????

has anyone had similar things happen on the long road to feeling better! thought my first rheumy apt was too good to be true, reading all your journeys.

thanks

chelle
 

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Pamela b
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424 Posts
Oh I am sorry you feel so confused, but not suprised I would be,

I understand because it is always my worry they say that it is all in my head after all and take away the dx. Like you I didnt want Lupus but it gives you an explanation for feeling so rotten. I would feel confused and maybe even ask my Gp is she could explain what is going on. He has given you plaqu which most of us here are on so maybe he does think you have some form of connective tissue ?
Does the rheumy copy you into letters to the GP ? Mine does and sometimes I come away a bit confused but the letter to the GP usually sorts that out for me.

He has said something is going on so maybe it will get sorted out.
I am sure the experienced ones on here will respond to you better than I can but my thoughts are with you and hope you soon feel better

Pam
 

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Hi chelle,

I'm sorry your rheumy appointment has left you feeling confused and dejected.

Getting a diagnosis is for most 'patients' a big validation and gives the idea of certainty. But in reality it is just slapping a label that kinds of fits onto a set of problems. What actually matters is the decision about what to do about your symptoms (the treatment). Your doctor has started you on plaquenil, which is the best medication to try to begin with. It is pretty safe and for most people with lupus and related connective tissue diseases is all they need. The fact that your doctor acknowledged that there is something real going on and started treatment is actually as good as a diagnosis. If it makes you feel better, just tell yourself you have lupus. In all probablility this will become official at some point in time, or something simmilar (UCTD for example).

So, if I were you, I'd stick around here, and if you want to join a local lupus support group.

The ANA being negative this time is a bit frustrating re diagnosis, but it certainly doesn't mean you aren't sick or should expect to feel fine straight away. It isn't related to disease activity, and if it has been tested once and found positive, future readings can't negate that. Doctors (and patients) like to see the positive ANA, but no one should ever discount your symptoms or withhold treatment on the basis of this one test alone.

All the very best,

X C X
 

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SAM M
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Hi

Hi Chelle have you read my post titled URRMM ??? we could be the same person ! Just wanted say your not on your own and sending you hugs ! Keep your chin and keep us posted.

Love Sam x
 

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Hi chelle :)

I too would be focusing on the fact that the rheumy is starting you on treatment. If you are being started on plaquenil, he clearly believes that something is going on and is taking you seriously.

A lupus diagnosis is complex and doctors can't always give a clear-cut answer, no matter how frustrating that is. It also carries pretty heavy consequences insurance-wise and sometimes not having that label can be an advantage.

I hope the plaquenil really helps. It'll take a good while to kick in but it really is an excellent med.

hugs :hug:
Katharine
 

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Hi, I know it is frustrating not to have a diagnosis, but the treatment of plaq is confirmation that your rheumy believes you have something. It does take time to diagnose and it is a long hard road. The plaq can make such a difference when it kicks in which adds further weight to the diagnostic procedutre.

Hang on in there!!!!

DEb
 
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