Am off to the Dr's tomorrow - what blood test should I ask him to do? I am having a flare at the moment so hopefully they wont come back negative - but just thought I would ask here as there is more knowledge on this forum than most of the quacks know about -In fact my Dr wrote on a letter to the Rheumy he has little knowledge of SS - BUT he is such a sweetie that I could say to him can you please run these blood tests:))
Issey
Issey, if you had already had positive results for anti-SSA and SSB, and ANA or ENA, it wouldn't really be necessary to have them repeated, unless it's once a year to monitor any changes brought about by treatment. If you were diagnosed on symptoms, and were sero-negative, as it sounds, it probably should be done now, in a flare, to see if the flare caused antibodies. Other than during a flare, the autoantibodies should probably be checked once a year to see if there has been any antibody production.
Routine monitoring tests could include CBC (complete blood count), ESR or CRP (for inflammation), routine kidney and liver panels (watching for side effects of drugs, or the remote chance of organs being effected by SjS), Thyroid functions (if not done in a year), and more commonly, doctors are including routing screening for Vitamin B12 and Vitamin D levels, and not just in people with autoimmue disease.
Issey, Don't have any advice on the tests. Just wanted to wish you luck. Roxanne
Issey,
Linda has pretty much given all the information you need concerning lab tests...but I also wanted to wish you good luck at your appointment tomorrow. I hope you get some answers!
Hi Issey,
Good luck on your tests today and I'll keep the fingers crossed for you! And don't forget to up date us!
Patze
Thinking of you Issy! Hope they don't bruise you up too bad!
Janna
Hi everyone - well good news I think :-\ my Dr just gave me some stronger painkillers said no point in him doing blood tests as he would not know what to look for:(
BUT he did say that if I were to find a good Rheumy he would send me - (I have had two so far that have dismissed me) So I came home googled it and found a hospital not too far away - they have five rhuemy's and two nurses I asked her if anyone specialised in SS and she gave me the name of one of the Dr's I called my Dr and he said he would refer me first thing Monday morning - So yes I am a happy bunny today:)))))
Issey
Great news Issey. I wonder how long it will take for your appointment to come through. I was seeing my rheumy every 6 months but he's reduced it to once a year. Fortunately I have a very supportive doctor who actually got in touch with me after my diagnosis so that I could go and see her. Any problems that I have I will chase up with her.
My left foot is aching today. Feel like my husband's been sitting on it.. and he's not a little chap!!!!
Good luck with it all
Sara
x
Issey, So glad that you found a Rheumy. Hope you are able to get a quick qppt. Let us know what the Rheumy says. Roxanne
Issey, that is such good news!!!! ;D And I'll keep the fingers crossed hoping that he's a good one! Please keep us updated!
Take care -
Patze
Hi Issey
This is good news. If you have to wait a long time to see the specialist there are a couple of things you could do:
- You could phone his/her secretary and say that you'd like to be seen asap and that you're willing to take a cancellation if they have one come up.
- Ask the rheumy for a list of blood tests that could be done prior to your visit so that he/she can have the information ready to help with diagnosis, rather than waiting until the second visit.
Hope the stronger painkillers are helping. What did your GP prescribe?
Take care - Chickpea
Hi Chickpea
excellent suggestions - I will get on to it straight after the week end;) Yes my Dr gave me the stronger painkillers - they make me feel drowsy so not sure if I am going to get on with them:( I don't like feeling out of control.
Have decided this time I am going to go with a list of all my symptoms with dates ect - there have been lots of changes since my last visit - saliva now non existant and the aches:( I could cry sometimes :'(
It feels like my shin bone has been run over with a truck. my hip hurts and so does my arm - think i will take a pill and crash.
Issey