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Discussion Starter #1
so ive been waiting patiently for the last 3-4 weeks for my results. but no phone call came. i phoned the surgery last night, and was told my results were and are "obviously fine" by the receptionist. which really bugged me.
so i've made an appointment for tomorrow, and am trying to sort out what i need to say!
im getting quite nervous. if my test results are negative, is that a definite NO to lupus, even tho i have most symptoms?

just needing some reassurance for tomorrow. thanks :)
xx
 

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Pollianna
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Aww bless you, hope you get this before you go. If they are fine then ask the doc if they can take bloods again when your feeling at your worst. Mine hid for years . Whatever happens deal with each symptom, if it's Lupus sure enough it will come out eventually

P xx
 

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Hi ashli,

Just wanted to wish you good luck with your appointment tomorrow. If possible I would try and get a copy of what was tested and the results. I would (despite normal bloods if that's what they are) still push to see some kind of specialist about your urticaria etc. Often specialists will look into things more thoroughly and run more revealing tests than a GP.

Let us know how you get along.

love
Lily
 

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Referral

Hi Ashli... best wishes for todays appointment. If you don't get the answers today then please be quite firm about getting a referral to a Rheumatologist, preferably one that has been recommended, you know your body better than they do, but unfortunately when we are worried we are not always firm enough about our needs. You definitely need to move this on if you are continuing to feel unwell, be thinking of you... be firm!!! ;)
 

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Hi ashli

Just wanted to wish you all the best at your docs appt. I would definitely ask for copies of your blood tests, so you can see what was tested for and the results. Let us know how you get on.

Deb
 

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Discussion Starter #6
hiya guys, thanks a lot for the messages :)
my doc was off today, but i saw another who was great. my ANA and RF results arent in yet, as they have to get sent to Glasgow, so take ages. but my inflammatory (?) levels are high. one is meant to be 0-5 and was 12, the other 0-11 and was 20. is this relevant?
she thinks there is definately something up. and has referred me to a rheumatologist! yay.
my ana and rf should be back before my app, so she told me ive to go back and get print outs of all my results and tests.
hopefully this is the start of finding out whats up!
xx
 

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Dear Ashli,
So the Receptionist spoke out of turn and made you worried for nothing.
All sounds quite hopeful, Good Luck.
x Lola
 

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thanks again :) its nice to have support!
yeah the receptionist did. im really not happy about that. but hopefully it wont happen again!
ill keep you posted :)

hope everythings well for you all!
xx
 

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Good to get the referral - that's a major hurdle jumped.

The two common inflammatory markers I know of are called CRP, C- reactive protein and ESR or SED which is erythrocyte sedimentation rate - how fast red blood cells drop in a test tube. They are significant because while abnormal levels show that the immune system is highly active, they don't say why. It might be due to an infection or other things not related to lupus or similar autoimmune diseases. It's certainly a helpfu indication along with all the other signs and symptoms.

Bye for now and keep in touch ! :)

Clare
 

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Hi there,
do you know, I was actually going to say that just beacuse the receptionist said they were fine, it doesn't mean that she was right. I have had them misconstrue results before. Now I just say I had some test done and can I some of the specific results and tell them what they are, write them down and then phone my gp if needed.

Obviously with major issues the gp rings me!

And yes ANA is usually one to two weeks if at a local laboratory so will belonger if has to be sent off.

The inflammatpry markers the one you said were high are the CRP, thats the one with the lower reference of 0-5 and the ESR is the other one wih the reference range of 0-11. These both measure levels of inflammation in the body and actuall how high these go really does depend on the person, that is what I have definately learnt! Some people can have quite a lot of physical symtoms of inflammation and the blood results do not seem to go that high, where as others can have the same physical symtoms and much higher levels. It is not definitive and it needs to be looked at along with clinical signs aswell.

These level are raised but most doctor would not say worryingly so, more like they would be consistant if you have joint pains and other symtoms.

So this is definately a sign of something but not neccessarily lupus, don't forget that some people like myself who really thought I would be heading for a lupus diagnoses if the blood work came through. Actually ended up with a diagnosis of MCTD, which I did actually think was a possibility too after loads of research and looking into all my signs and symptoms. I would definately try to keep an open mind untill the results come back.

In lupus what they say it that the CRP is borderline or not raised and the ESR is more likely go up with inflammation but this is ceratinly not definative either as again everyone is different and therefore the effects of the diseases differ depending on the individual.

Good Luck with everything I really hope you won't be waiting for too long for your results, it seems like it take for ever!! And your on the edge of your seat the whole time.

Take Care

Cassie :)
 
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