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Miraid
09-18-2012, 01:13 PM
So I just saw my new rheumy today and all seems great. He's very nice, very talkative, explained things to me like never before. He mentioned that he wanted to confirm my diagnosis and I gave him a copy of my last labs. He looks at them and says that the positive Ana is the m out non-specific test and that the rest of the labs look good. He says that he would not confirm lupus on just the positive Ana he uses the rest of the profile. My question is: if one uses one criteria and another uses a different, we will be in a perpetual cycle of being diagnosed and undiagnosed. Regardless, I feel like crap, I'm trying to medically retire from the army and if he is saying that I infact do not have sle...I guess that means I am just crazy!

Mica
09-18-2012, 06:27 PM
I'm sorry your going through this. I was lucky, lucky is not the right word but I can't think of another, that the lupus in me was pretty clear. I was fortunate that I didn't have to go through doctors for a diagnoses when I was clearly sick. I don't know exactly what your going through but I do know how it feels to always be sick. Even if your diagnoses isn't lupus you can talk to us because we do understand even when others think your crazy. I hope you start feeling better!

tgal
09-19-2012, 12:40 AM
I actually answered this from my phone today but apparently it didn't send!

The new doc is right and wrong. He is right in saying that a positive ANA is not enough to confirm a Lupus diagnosis. Many basically healthy people have a positive ANA it is simply a test that tells the doctors that they may want to look in the direction of AI diseases. Having said that I need to also say that there is no test for Lupus and GOOD doctors that understand our disease know that often times it takes more than blood work to diagnose a person. Only part of the criteria for Lupus are medical tests. Others are symptoms and understanding what the disease causes to happen.

It sounds to me like your first doctor really understood Lupus and what is required to get a diagnoses (4 of the 11) and the new doctor is a "lab" doc. Although I won't tell you what to do I will tell you that I personally would find another doctor. No matter how nice this one is you need one that gets this disease a bit better.

Miraid
09-20-2012, 10:10 AM
Thank you Mica. I thought the wondering was over, but I guess not.

Miraid
09-20-2012, 10:34 AM
I actually answered this from my phone today but apparently it didn't send!

The new doc is right and wrong. He is right in saying that a positive ANA is not enough to confirm a Lupus diagnosis. Many basically healthy people have a positive ANA it is simply a test that tells the doctors that they may want to look in the direction of AI diseases. Having said that I need to also say that there is no test for Lupus and GOOD doctors that understand our disease know that often times it takes more than blood work to diagnose a person. Only part of the criteria for Lupus are medical tests. Others are symptoms and understanding what the disease causes to happen.

It sounds to me like your first doctor really understood Lupus and what is required to get a diagnoses (4 of the 11) and the new doctor is a "lab" doc. Although I won't tell you what to do I will tell you that I personally would find another doctor. No matter how nice this one is you need one that gets this disease a bit better.

My "smartphone" betrays me all the time! :)

I was aware that a positive ANA alone was not enough to diagnose lupus, but I was under the impression it was the last piece that my last doc used to confirm. I have a loooong medical history starting back from deployment to iraq in '03. I then had a weak positive ANA and an elevated SED rate along with other issues such as multiple joint pain, skin rashes, lesions, photosensitivity, severe migraines, but the army dismissed it as FMS. However, later I started having other issues such as visible swelling and hair loss. I am also going to consult with a navy doctor, hopefully that will yield positive results ( I have very little faith in army docs, Ive heard better things about navy docs) I need to have all of this in my military medical records regardless. I will go and get all of my blood drawn and in the meantime, I think I will look for another civilian doc locally. Additionally, having been on plaq for over a year now, would that not have an affect on what my bloodwork should look like now?

Tiffany

tgal
09-20-2012, 10:56 AM
Of course being on the meds change the bloodwork and the doctor should know that! I thought he was looking at the original bloodwork. I swear I want to hit docs sometimes! I say find one that knows what he is doing!

jmail
09-20-2012, 02:53 PM
The doc *has* to look at the *whole* picture of the patient, and should *not* diagnose on the first page of blood test results... just my opinion. Dealt with it way too many times over the years...

jolynnhughes
09-20-2012, 05:37 PM
Tiffany, I was going to ask you who your first doctor was, and then I saw he was a Navy doc. Oh well! I was going to go see the first one. Desperate for a doctor who doesn't go by bloodwork alone! Someday, my diagnosis will come... (sing it to someday my prince will come). Good luck to you!

magistramarla
09-20-2012, 09:26 PM
Hi Tiffany,
I've had the same experience. A wonderful rheumy in Texas diagnosed me and put me on meds.
Then, we moved to Ca (military move) and the new rheumy insisted upon re-doing all of the labs. She has dismissed most of what the last doc diagnosed.
Why don't they take into account that the meds might actually be working?

As a military spouse, I understand what you need to do. You need to make very sure that everything is done properly on your records, because that is what will determine your percentage of disability. I also agree with you that Navy or AF docs are usually better than Army docs.
Good luck.
Hugs,
Marla