Had my first Rheumy appointment and it was a bit of a letdown. I came prepared with printed lists of my meds, history, and questions. The nurse spent more time with me than the doctor! He stated that though I did test positive for ANA and anti DS DNA sometimes they are false. He asked why my GP had me tested, (implying my GP didn't know what he was doing.) Duh, my GP had me tested because of my long and varied list of symptoms.
I must say that my GP's office had not sent my complete history, just more recent stuff and results from June labs. I directed the Rheumy to my history and DX list. He just glanced over it. Asked a few questions then went thru the diagnostic criteria list. I will give him another try in three weeks when I go back for results.
He did answer my questions and ordered every lab test imaginable and a brain MRI.
Think they will find the Swiss cheese holes my thoughts seem to fall through?
I'm exhausted this last week and just had a chance now to let it all out so to speak.
Btw where can i find info about ANA and anti DS DNA lab levels or numbers? What level is normal and where does elevated and Positive fit in? My searches get me threads that tag the words but I'm not finding info about numbers.
With regards to you new rheumy, give him a little while. It took me a few visits for my doctor to get a hold on what was really going on with me. She had to see it for her self at first. She became a believe in a very short time. I still test negative for systemic lupus. But last Friday my nerphrologist final gave me the diagnosis I have been waiting for, for over twenty years. If you like him otherwise, just hang in there for a few visits and see. Sometime doctors like to do there own blood testing.
Sorry about your first appointment being a total let down...sounds alot in his manner like my rheumo but where you was talking to a nurse more...i was talking to 5 doctor's learning the business before i saw him...so i know how you feel mentally, as it does'nt help when bloods have been took previous "the proof was in the pudding" as we call it and then he's persistant on more bloods and he's done this to have bloods confirmed for himself but getting an MRI done will also help.
I really hope when you go again Lisa your outcome is a better one mate and knowing what is exactley going on with you but having extensive bloods done furthur does help...my rheumo had it done with me besides my body temp took and it's put in a container and sent off, it covers more fields regarding A1 Diseases and Autoimmune Disease.
I have positive ANA & DS DNA & the Rheumatologist who diagnosed me said DS DNA is significant for Lupus. My presenting symptoms were kidney inflammation ( Lupus Nephritis) & later a kidney biopsy confirmed Lupus. I've heard sometimes the symptoms come & go & can imitate a host of Dx's. Sometimes it takes a while for the labs to test positive. If you can't communicate with this Dr by asking him these questions & getting satisfactory answers you may need to change Dr's. I had symptoms for years that went undiagnosed by several Dr's because my lab work wasn't conclusive. Hope this helps.
I understand your disappointment, especially when it takes us so very long to get to the Rheumatologist. I do not have a lupus dx myself yet, but with the three autoimmune diseases I do have a full dx on I can tell you that caution before starting you on these drugs is not a bad idea.
Nearly all Rheumatologists are also Internists, so they are good diagnosticians. Give him a chance to run his own tests, exams, and follow the necessary protocol, especially since you only have to wait 3 weeks before returning. I know that you want and need answers, I would too, but give him a chance to give you the right answers.
Please be patient for a while longer, remember, Lupus is known as the great imitator.
I would be happy to share my personal test results with you to give you an idea of what positive readings can look like. I do know that some dsDNA tests have different types of scores, so it can vary. It probably depends on the particular lab or how the doctor orders it. Not sure. My understanding, from the studying I have done, is if you have a positive ANA and a positive DsDNA test, you most certainly have lupus. DsDNA is very specific for lupus and is extremely accurate. I hope this helps.
dsDNA Ab: 112 Interpretation: Positive (>=30.0) Reference range: <30.0 (Negative) Unit: IU/mL Testing performed by Mayo Medical Laboratories, 200 First St. SW, Rochester, MN 55905
Thanks Deenie for the links. I will give this a little time and see how my next visit works. I think that I was put off by his doubt of my Gp. Finding a good one is difficult. He is thorough, and really listens to me.
Your right though about the Rheumy wanting to get his own set of labs. He did run the whole list. Patience is not my best attribute. The prednisolone doesn’t help either.
Lisa
Dewing3569 said:
Here are a few sites I found. I hope they help you.
With regards to you new rheumy, give him a little while. It took me a few visits for my doctor to get a hold on what was really going on with me. She had to see it for her self at first. She became a believe in a very short time. I still test negative for systemic lupus. But last Friday my nerphrologist final gave me the diagnosis I have been waiting for, for over twenty years. If you like him otherwise, just hang in there for a few visits and see. Sometime doctors like to do there own blood testing.
Your correct in your statement, if you have positive ANA/ENA and also dsDNA which i had also....then you do have Lupus because DNA is a large factor on the diagnosis of Lupus plus matching with medication, that allows what you body is able to take in certain drugs besides.
Love Terri xxx
Jenniferforhealing said:
I would be happy to share my personal test results with you to give you an idea of what positive readings can look like. I do know that some dsDNA tests have different types of scores, so it can vary. It probably depends on the particular lab or how the doctor orders it. Not sure. My understanding, from the studying I have done, is if you have a positive ANA and a positive DsDNA test, you most certainly have lupus. DsDNA is very specific for lupus and is extremely accurate. I hope this helps.
dsDNA Ab: 112 Interpretation: Positive (>=30.0) Reference range: <30.0 (Negative) Unit: IU/mL Testing performed by Mayo Medical Laboratories, 200 First St. SW, Rochester, MN 55905
Just a side note: Many doctors, and especially specialists, really don't like anyone else doing their job. It's an ego thing, that only THEY know how to diagnose something as complex as Lupus, and how dare anyone else think they know anything. Especially patients, which is really hard these days with the internet, we know A LOT more than they want us to.
"Smack on mate and it made me laugh"...my old Rheumo and me used to be up in wars when i saw him and he sent a letter to my GP that i was talking in medical terms which was wrong....that goes for other doctor's or patients they hate the challenge.
Renie said:
Just a side note: Many doctors, and especially specialists, really don't like anyone else doing their job. It's an ego thing, that only THEY know how to diagnose something as complex as Lupus, and how dare anyone else think they know anything. Especially patients, which is really hard these days with the internet, we know A LOT more than they want us to.
I'm sorry your were disappointed by your first visit : (
Mine asked me the same thing too: why are you here: I just said because my GP sent me. I just wanted to know what was wrong with my feet, I didn't want anything else to be wrong just fix my pain. When I seached high ANA levels, and read it could be lupus I decided that I wasn't going to have any of that. My first visit my rheumie diagnosed RA, and I was ok with that. Not happy, but ok. He ordered a bunch of blood work, and on my second visit, he was a bit more compassionate and then changed my diagnosis to Lupus. Of course I promptly went home and cried. I started taking plaquenil, and I return for my 3rd visit on 9-4 after some more blood work.
How you feeling now since you posted your thread...i really hope you have'nt took it as to much of a set back, just try and stay hopeful for you next lot of results.
My memory is not great but I recall my dr giving me this information. It is a process of deluting the blood untl the ANA is no longer detected. Anything 1:40 (or 40 times) is negative. They dont become alarmed until it reached 1:80. My Dr told me mine is the highest he has ever seen, it is 1:126. I have never asked anyone there results...maybe a good idea to see how bad it can get. I dont know about you, I am always looking for a scale to grade where I am at in this fight. It makes me feel in control in some strange way.
I think you have it just right with this doc. I had a follow up on my meds with my GP and he said he got a note from the Rheumy insinuating he made his diagnosis just on test results! My GP reassured me that he has taken into account my history, symptoms and previous test results. I really like my GP and know he's on the ball.
I'll just wait it out until I have the follow up and see how it goes. Doctors often don't want patients to think they know anything, but I figured at least professional courtesy would temper this one's ego.
Lisa
Renie said:
Just a side note: Many doctors, and especially specialists, really don't like anyone else doing their job. It's an ego thing, that only THEY know how to diagnose something as complex as Lupus, and how dare anyone else think they know anything. Especially patients, which is really hard these days with the internet, we know A LOT more than they want us to.
Thank you all for sharing the links and test info. But especially for your feedback regarding the doc. Sometimes I get wound up too tight and your thoughts on him made me feel better about the visit.
The links and test info were a great help. I want to know whats what so to speak.
I just have to keep going as best I can each day. I'm sooo happy my Mother is back home for my support. She was away for the summer and is my only support other than my GP and LWL. Hubby is a negative in most ways. oh well. Does anyone go to a "live" support group and if yes I would love your insight and comments about them pos and neg.
How are you going on the plaquenil now besides, as your system excepted it ok?...as you added it to kathy's thread, it would be lovely to hear if your doing alright.
Lisa and all my love you way. Terri xxx