So Saturday at work I nearly passed out. My blood sugar was all over the place with a lowest point of 62 and a highest point of 91. I was aching like crazy, my joints were killing me, and I just completely felt like crap. I left work and went to the ER and stumbled in. They were quick to put me in a wheel chair, but took almost 3 hours to get me to the back. I was running a low grade fever (99.8) and all my blood work was “okay” (gonna get copies in a few days to evaluate for myself). The ER doc spent a while talking to me about symptoms, I told him the current symptoms and went over other things (to include unexplained seizures, painful muscle spasms, and an unexplained TIA) and he asked if this had all been evaluated together as combined symptoms. My old Primary Care refused to do that. Every time I have had an ANA test done its been because I fight for it. The ER doctor told me he had included ANA in my blood work ad it was “inconclusive” (didn’t know there was an “inconclusive” result category on ANA) but strongly urged that I bring it up at my follow up with my new Primary Care. He said he believes it may be Lupus (this makes 3 ER doctors, a Gastro and a neurologist who have said this) but he cannot make the diagnosis because the ANA is not positive. Wtf?? I have heard so many people say that they will be in the middle of a flare and be negative on ANA but feel fine and go for routine annual blood work and show positive on ANA, so why is the positive so important with so many other things that could easily be explained by Lupus? It’s the only thing that connects the vast majority of my unexplained issues and I show the vast majority of the “symptoms” of Lupus?? When I look at WebMds list of lupus symptoms the only one I have not experienced is a facial rash (I get rashes on the chest and thigh).
Jason,
I'll tell you my experience which may help. I had a positive ANA since I was 25 with some low-key symptoms. Every summer got hives until I was given a proper sun screen in my mid 30s. These low-grade symptoms persisted for several years (until 50s) except for aches which I blamed on getting old and took tylenol and aspirin or ibuporfen.
One day about 15 years ago, I ached so bad I could hardly move. Felt like the flu++++. I made frequent trips to the ER and urgent care and was diagnosed with fibromyalgia. And in 2000 I was diagnosed with autoimmune hepatitus by an ER doctor which was confirmed by biopsy by a GI doc. Didn't even notice that I was mildly yellow. Got some prednisone Immuran and was OK for a couple years.
2003, after numerous urgent care and ER trips, I had chest pain, a fever and a peeling nose. I was diagnosed with lupus by an ER doctor who said I had pleural effusions on my lungs from an Xray. Was I ever sick. Then I finally got a Rheumy that I could talk to and all my tests were finally coming back positive. There a numerous other tests that they sould be doing on you.
Prior to this, I went through several physicians including another Rheumy in my health plan before getting good diagnoses of my several autoimmune diseases. It turned out I had Sjogren's too. All the clinical docs thought I was crazy psychosomatic, wanted to give me Prozac. It's a tough road. I felt like a fool. But there really was "something" wrong.
You can have mild symptoms and the blood tests are under the "radar." I've just found out that the new thoery about autoimmune disease is that it's low key 9 years before an actual full-blown flare and/or a perciptating incident and the blood tests show results.
Do you have a rheumatologist? If you have an HMO keep at 'em. A GP is not usually a good doc to diagnose lupus.
Stay strong!
Jason, I’m sorry you are going through this. It took me a VERY long time to get diagnosed with Lupus. I went to 3 different rheumatologists before I found one who listened to me. My insurance does not require me to have a referal from my primary care physician. So, I kept trying until I found the right rheumatologist. My ANA has always been negative, but I meet enough of the symptom criteria to get a diagnosis. My advice to u is to keep a journal of symptoms. Build a timeline of the past symptoms. Find a lupus support group/blog for your area. Ask the others which rheumatologist they use. Look the dr up online. Read patient reviews about him/her online. When you have your appointment, present your journal of symptoms. Don’t give up!!! I am an RN and it took me 10yrs to get diagnosed. Lupus can immitate so many other conditions. If you don’t feel comfortable with the rheumatologist that you find, then get the ball rolling to find another one. Good luck with finding a good primary care Dr as well. It is so important to be comfortable with and trust your Dr…Good Luck! Keep your chin up!
Jason, Relaxe for a moment (stpo thinking for a moment ) , okay , Living with Lupus is very stressful and PAINFUL , yes . But YOU HAVE TO BE IN CONTROL AT ALL TIMES AND BE FOCUS !!!! okay . Eventhough you have been to 3er's those doctor's really don't know how to diag, they will on say it might be this or it might be that . Find or go back to your GP, and ask for more tests to be done and you have to have a better explaination of the results. Yes you have to get BOSSIE with them ( remember you are the one that is in PAIN !!!) LUPUS mimic so many things and yes the pain overwhelm you /us alot of the time -but you got to fight . Also i use to have the butterfly rash in my face all the time , but lately for about 6mths i've been without the rash !!! It was horrible for me look at myself in the mirror at time but i fixed all that , i started taking biotin , vitamin E , and using cortizone 10 for eczema at 1% mixed with vasline (on my face -every other day) , but of course what is meant for me (maybe ) not for you, but to pass on knowleadge is what i like doing . Hope that you feel better soon , and that the doctor get a result that will relieve you ,talk with you later ...Beverly L.
Dear Jason, Totally understand your frustration!!! It took me 3yrs to finally get someone to send me to a rheumatologist!!! The first one I had was not a good listener and was very dismissive. First she tells me I have lupus and RA then 1yr later she tells me I have undifferentiated connective tissue disease…I am with you wtf!!! Just had appt with new rheumy who is running her own set of labs and scans and we will see what she has to say. I have had a positive ANA for the past 5 years and am still getting the run around. Don’t let the frustration get to you because you are the only one who can fight for this!! Find a good rheumy and see where that takes you. It takes months to get an appt with these people so start now and make appointments with a few if necessary. I know it sucks!!! But you are your best advocate. I wish you luck!! Let us know how it goes. Stay strong!!!
I would not accept an ER doc's opinion as a diagnosis Lupus and all the other autoimmune diseases are very complex and requires a specialist to diagnose A slightly elevated ANA is NOT diagnostic of lupus- there is a lot more to it than that With you feeling so bad you need to get under the care of a rheumatologist to once and for all determine a course of action and the ER is not the place to get it. Good luck to you and prayers that you may soon be feeling better
Hello Jason,
Sorry to hear you went through this issue...it's just pure madness how your not being treated properly with a proper diagnosis as you have to many issues occur plus all this is noted and it sounds like the ER doctor covered some issues with you, which come related with Lupus besides being natural to the body.
Jason there is a borderline called "inconclusive" result category on ANA" in otherwords your stuck in the middle of your ANA throwing either way to either negative or positive for Lupus.
Borderline can mean any number of things depending on the doctor. Do you actually know the titer of the ANA result? Usually it is expressed as 1:80 being the first positive, then 1:160, 1:320, 1:640...the numbers just keep doubling but there again it's all down to your specialist on how he's going to treat you and the higher your titer the more positive for Lupus.
The link below explains how it works regarding ANA testing.
http://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/
Terri :)
Sounds like where I am. Been sick since age 9. Last month a positive ANA, but not positive enough. Oh, well, I suppose I just go get blood done now and then?? I am concerned about my kidneys which are a bit swollen and trace blood in urine. But BUN agin not high enough. But I will watch it.
USAGURL said:
Jason,
I'll tell you my experience which may help. I had a positive ANA since I was 25 with some low-key symptoms. Every summer got hives until I was given a proper sun screen in my mid 30s. These low-grade symptoms persisted for several years (until 50s) except for aches which I blamed on getting old and took tylenol and aspirin or ibuporfen.
One day about 15 years ago, I ached so bad I could hardly move. Felt like the flu++++. I made frequent trips to the ER and urgent care and was diagnosed with fibromyalgia. And in 2000 I was diagnosed with autoimmune hepatitus by an ER doctor which was confirmed by biopsy by a GI doc. Didn't even notice that I was mildly yellow. Got some prednisone Immuran and was OK for a couple years.
2003, after numerous urgent care and ER trips, I had chest pain, a fever and a peeling nose. I was diagnosed with lupus by an ER doctor who said I had pleural effusions on my lungs from an Xray. Was I ever sick. Then I finally got a Rheumy that I could talk to and all my tests were finally coming back positive. There a numerous other tests that they sould be doing on you.
Prior to this, I went through several physicians including another Rheumy in my health plan before getting good diagnoses of my several autoimmune diseases. It turned out I had Sjogren's too. All the clinical docs thought I was crazy psychosomatic, wanted to give me Prozac. It's a tough road. I felt like a fool. But there really was "something" wrong.
You can have mild symptoms and the blood tests are under the "radar." I've just found out that the new thoery about autoimmune disease is that it's low key 9 years before an actual full-blown flare and/or a perciptating incident and the blood tests show results.
Do you have a rheumatologist? If you have an HMO keep at 'em. A GP is not usually a good doc to diagnose lupus.
Stay strong!
Hello Bobbie,
My kidneys was bad years back in my late 20s where i was losing blood...get some pearl barley you add in stew and boil as much as you can in a saucepan, once it's cooked drain the juice from the barley into as many bottles as you can and once cooled fridge them besides drinking them and if you don't like the taste much add a slight bit of sugar and pearl barley is an old remedy here for flushing out the kidneys...i drunk 5 large bottles in 2 days and it cleared.
Thinking of you dearly Terri xxx
First of all, I want to say welcome back to Terri! Glad to see you are doing better!
My insurance does not require a referral to see a specialist, but I have only found 1 Rheumy close to me who I think would be a good fit (4 months for a new patient visit). I guess I forgot to state in the original post, but the last ER visit there was a Rheumy on staff at the hospital that did see me and review some of my history and told me to see a Rheumy for further evaluation (bad thing is, this Rheumy doesn’t accept my insurance). I do not know the titer of the last ANA test, I have to pick up the lab work copies earliest Thursday and the previous ANA test papers didn’t state the titer, just said negative. I’m beginning to think I may not have an answer until I am 30…which if I’m right would be 17 years from the first major symptom.
Not sure if this would help, but I have a phone app that receives lab results. You just have to order them wihin three months and know the exact date of the labs . It's Gazelle.com. An alarm will go off when a result is ready. I really appreicted having my results before seeing a Rheumy for the first time. Granted, the doc still did not know why I am in chronic pain, but hey, I have started my own collection of results on my flash drive.
Hello Jason,
Thank you mate on welcoming me back...nice of you :)
I know it's 4mths but it's worth waiting if yu think he'd fit the bill, here it's 6 -12mths but this new rheumo with myself as been good and honest and that's what you need, i know each day is hard and a right tester on we all but try to bare with it as you have done so fare.
I knew the last visit to ER was a rheumo on staff and alot have different views and if he thinks more evaluation needs doing then your bloods are showing something and when you see your new rheumo state this Jason as it's important as it makes them look into your case even more coming from a specialist in emergency.
Jason when you get your results pm me with them and i'll check them out mate and get back to you, if you'd like to do that.
Do takecare my friend hugs Terri :)
Bobbie,
Nice one mate for adding this link for Jason and other members to see :)
FOR GETTING BLOOD RESULTS GET INTOUCH WITH "Gazelle.com"
Graveyardnerd said:
Not sure if this would help, but I have a phone app that receives lab results. You just have to order them wihin three months and know the exact date of the labs . It's Gazelle.com. An alarm will go off when a result is ready. I really appreicted having my results before seeing a Rheumy for the first time. Granted, the doc still did not know why I am in chronic pain, but hey, I have started my own collection of results on my flash drive.
Oh I feel so powerful and in control of my lab work. I get confussed as to when I got them and so forth. Now, I have them on my phone and flash drive. I can keep on top of the labs.
Julie, the ER doc may have been referring to previous results. By the time he came in to go over the test results I was out of it. I wish I could only spend 2 hours in the ER. I was in there for just under 12 hours (at 12 hours they have to admit you and bring you to a permanent room). I have been looking for a new GP, and think I found one (not sure if you saw the post I put about the old one, but he’s not allowed near me anymore). TIAs are no fun, been there done that. :-/ As for keeping records, I have every single lab results dating back 3 years and some dating back further that correlate to major events. I have a journal I have been keeping to go side by side with the lab reports and office visit notes. It stays in my car and goes to the doc and hospital with me.
Hi Jason,
The specialist in ER would be looking at your old results...as that's the first thing they look up is your records and what's been happening recentley and for bloods to be confirmed properly is as long as julie as stated nearly 10days.
I am pleased you've got a new GP Jason and fingerscrossed mate he works out ok...the last one was a pure joke and TIA's i've been there myself and your right they no fun what so ever.
"NICE ONE JASON - KEEPING A JOURNAL COVERING ALL ISSUES"
Terri,
I have no problem (right now) with waiting a few months for an appointment, especially since this Rheumy has come very highly recommended and has a sparkling record with the medical board, is board certified, has enough experience to know what’s going on yet is young enough to be more modern on technology and treatment methods, and did I say is VERY highly recommended by a nurse I trust very much? Right now I’m just waiting to be accepted by the doc as a patient because the practice is rather full and higher end of the rankings, this being very popular.
Tez_20 said:
Hello Jason,
Thank you mate on welcoming me back…nice of you
I know it’s 4mths but it’s worth waiting if yu think he’d fit the bill, here it’s 6 -12mths but this new rheumo with myself as been good and honest and that’s what you need, i know each day is hard and a right tester on we all but try to bare with it as you have done so fare.
I knew the last visit to ER was a rheumo on staff and alot have different views and if he thinks more evaluation needs doing then your bloods are showing something and when you see your new rheumo state this Jason as it’s important as it makes them look into your case even more coming from a specialist in emergency.
Jason when you get your results pm me with them and i’ll check them out mate and get back to you, if you’d like to do that.
Do takecare my friend hugs Terri
Hello Jason,
Well being recommended by a friend you trust helps such alot and i really do hope you get in because you've gone a fare bit now with symptoms and suffering fingers 
mate i do hope they except you.
If they do except and you have to wait abit before seeing the specialist at least in your home mind your in safe hands and should be treated well, oh i hope it does work in your favour mate.
All the best Terri :)
My Rheumy did not make the diag because the lab tests were negative. My Derm looked at my skin rash, felt my arms skin, looked at my face, ordered biopsies, and told my Rheumy to treat me for Lupus when the biopsy results were back.
Hi Latina,
You was totally diagnosed the same way as myself but i did'nt need the biopsy...the dermo confirming skin issues then bloods to back it up which confirmed Lupus, then i was refered on.
If members have skin issues sometimes Dermo's can be alot better at finding the causes out.
Terri :) xxx
Latina said:
My Rheumy did not make the diag because the lab tests were negative. My Derm looked at my skin rash, felt my arms skin, looked at my face, ordered biopsies, and told my Rheumy to treat me for Lupus when the biopsy results were back.