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View Full Version : a bit deflated - how many people have bloods that suport lupus diagnosis?



Heather
02-19-2013, 03:06 AM
hi all

I had my first rheumatologist apt today and to say I was disappointed would be an understatement.

This Dr didn't seem too interested in helping me reduce my symptoms. He looked at my bloods disregarded the results saying things like "1 in 10 people will test positive and never be symptomatic" yet here I was symptomatic and testing positive for some kind of antigen...and with my family history of AS, Thrombosis and Sjogrens and myself having Hashimotos - he was not willing to check for anything else - he said I don't have lupus - although im not 100% that everyone who has lupus has the blood test results to match (correct me if i'm wrong) but he seemed so confused that I wasted my time and money with him.

When I asked what his opinion was he was saying "I don't know if its mechanical or illness related" this was only after he found out that I have an 18 month old daughter - whom walks so he was trying to put it all down to RSI - but I have been working 3 days per week for the last 10 months and my job is at a desk so my work at home and away from the home is varied.

Anyway I wont continue venting but if anyone can let me know what to do next would be great....ps have any of you taken dicoflenac 50mg tablets are they useful for pain or is this also a waste of time on his behalf??

Sorry one more thing - what normally gets tested when trying to rule out lupus when looking at my test results nothing says "lupus' on them.....

Derrie
02-19-2013, 06:48 AM
Heather,

I'm sorry your visit was disappointing. My first rheumatologist visit was a disaster, too, with the guy telling me he "couldn't do anything for me" even though I had skin biopsies that could only indicate some sort of autoimmune connective tissue disease (CTD). I had to go find another rheumatologist -- one who was comfortable working with someone with a weirdly presenting, unidentified CTD.

As far as blood work goes, some common tests are ANA w/ Reflex to look for antibodies; Complement C3 and C4 to check for immune activation; C-Reactive Protein and ESR for inflammation. Most docs also run a CBC w/ metabolic panel to get a general picture of your health. What tests did you have run?

You can have an autoimmune disease without positive blood tests, but it's a lot harder to get a diagnosis when your blood is not cooperating. I remember in your first post, you mentioned you'd had bloodwork indicating you had a CTD. What bloodwork have you had done that's abnormal? What did you test positive for?

Heather
02-19-2013, 01:03 PM
I tested positive for hla-b27 relating mainly to ankylosing.spondolitis but I didn't think.I fit the.mold for that condition, hence why I did some research into my symptoms and lupus seem to fit, I know I had others test run but I don't know.how or if they fit intoo this diagnosis

I had been iron defficient however I am on iron tablets for that now, I.have a deficiency in factor viii. Which I don't know what relevance that has, but he didn't suggest that was relad or he didn't know what that meant . Regardless ill be getting a new.Dr but if you know anything about those tests I had done, please let me know :)

Derrie
02-19-2013, 03:54 PM
I tested positive for hla-b27 relating mainly to ankylosing.spondolitis but I didn't think.I fit the.mold for that condition, hence why I did some research into my symptoms and lupus seem to fit, I know I had others test run but I don't know.how or if they fit intoo this diagnosis

I had been iron defficient however I am on iron tablets for that now, I.have a deficiency in factor viii. Which I don't know what relevance that has, but he didn't suggest that was relad or he didn't know what that meant . Regardless ill be getting a new.Dr but if you know anything about those tests I had done, please let me know :)

Hey, Heather. So, HLA-B27 is a human leukocyte antigen type. It's basically part of your genetic make up that relates to your immune system. (Better explanation at http://en.wikipedia.org/wiki/HLA-B27). So the HLA-B27 test is describing a part of your genetic make up, but it does not diagnose a disease. You are right, though, that it is related to ankylosing spondylitis, but having the HLA-B27 genetic type does not mean you will have AS-- just that you are more likely to have it. For example, I have two close friends who are brothers who both are HLA-B27 positive. One has AS and one doesn't.

I would recommend that you continue to monitor your symptoms. Keeping a symptom journal where you track how you feel each day, when you feel worse or better, what impacts you symptoms, etc., may be helpful. Often, doctors can figure out what's wrong with you based on your history of symptoms alone.

I hope you find a good, new doctor soon!

steve.b
02-19-2013, 08:41 PM
it does sound to me as if the doctor does not know enough about auto immune problems.

did you ask him about his expertese in this field?


i would reccommend asking for a second opinion.

remember you pay the bill.....
therefore the doctor works for you.
if it was a mechanicwho you paid and did not fix your car.....
you would not go back.
arn't you more important than a car.
treat yourself with the status you deserve.
find a doctor who has skills in your area of problems.

tgal
02-20-2013, 10:11 AM
I must start out this post by reminding you that we are not doctors and we can't tell you if you have lupus or not. The problem with Lupus is that it mimics so many other diseases that it takes a trained professional to tell. Having said that I have to agree about getting a second opinion. You know your body and what is going on and too few doctors actually understand this disease. Sometimes understanding it means knowing that bloodwork doesn't always come out the way you think it should. Sadly this is why it can take months or even years to get a firm diagnosis.

as Steve said, you hired him, you can fire him. Don't give up until you get answers to your questions. I will give you this piece of advice though. Don't go in firmly set on gettin a Lupus diagnosis. Go in expecting them to find out what is wrong with you and don't give up until they do. You deserve to feel better and you deserve answers. We are here for you as you travel this path

Heather
02-21-2013, 04:04 AM
Thanks for the comments all - originally I was told by my gp that my symptoms suggest a rheumatic condition - he ran the tests and after him figuring which one I was obviously more at risk of developing = after research into my own symptoms I realised that I was nothing like the Ankylosing Spondolitis (that I have tested positive for) - in the text book sense - after googling further; lupus seemed to fit - I only want to get help for the pains I feel Im only 28 and walk about like a cripple in the morning - im not sure if the doctor will figure out what I have but although lupus may not be It I would assumed the Rheumatologist would have done a bit more than just looking at me and my bloods and leaving me for 6 weeks to see what happens next....thanks for sharing your experiences with me - I try and learn as much as I can to find out if this is the disease I have or if something else - but ironically this "dr" I saw suggested that many of these conditions are treated the same way so a diagnosis isn't important as long as relief can be sort.

im going to get a new referral to another rheumy and see if they can act a little quicker than this guy..... :)

Derrie
02-21-2013, 06:39 AM
but ironically this "dr" I saw suggested that many of these conditions are treated the same way so a diagnosis isn't important as long as relief can be sort.

I will say that this phrase from your doctor is relatively true. As you know, I have not received a specific diagnosis in over two years. However, because we know it is autoimmune, my doctors have assured me that not having a specific diagnosis does not put me at much risk because they would generally be doing the same thing even if I had a specific diagnosis: they'd have me on a disease-modifying drug (I take Plaquenil) and would work to alleviate my symptoms (amitriptyline for pain).

I know it is frustrating not to have a diagnosis, so I think it's good you'll be getting a second opinion. But if that doctor can't diagnose you, I would say not to be too frustrated-- sometimes we just don't fit the classic picture of a specific disease, and it takes time to figure out what is going on. However, it is important that you get adequate symptom relief. Morning stiffness is a hallmark of inflammation, so it sounds like some sort of NSAID, like Naproxen or Mobic or Ibuprofen, could possible help you. I'd be sure ask your next rheumatologist what sort of symptomatic relief he can help you achieve.

Keep us posted!