View Full Version : Negative Blood tests but symptoms all over!
03-05-2009, 03:36 PM
Hi there. I have posted on here before with all my symptoms. I am not going to do it again to spare you all the hassle lol Anyhow, I have had 2 rounds of bloodwork done and each has been normal at least with the specific tests for autoimmune and lupus. My ana was a little high but non-specific last time which my pcp blaimed on the uti I had. I also had blood spilling into my urine. She disregarded this and said to come back in a year. Needless to say I switched pcps but have yet to see the new one. I saw my neurologist a little over a week ago and he is ordering all the autoimmune tests because he said I have raynauds and mentioned "It can be caused by lupus." Im thinking, tell me something I dont know! lol I just want to know if these tests come back negative where I should go from here. Can you have all negative tests and still have lupus or autoimmune at all? Id love to hear some stories of people who can possibly relate to my situation. I was actually thinking of waiting till I flare to get the bloodwork done. I look forward to your replies :) Hope you feel well. -Brit
03-05-2009, 04:32 PM
Just hang in there i have sent you a PM. You will see people post here soon to help you.
03-05-2009, 07:00 PM
Hello and I am so sorry that you are having such a hard time right now...I do understand. I have had positive and neg. blood results in the past...sometimes I have all the horrible symptoms going on when its neg. and the doctors are like everything is a ok....yeah right. I hurt!!! So I do understand and keep trying to get answers...it somethimes takes awhile but people around here understand!
sick n tired
03-05-2009, 10:14 PM
I understand the frustration. I just had bloodtests that were all over the place two weeks ago come back normal this week. Symptoms are still there,though. Of course...you might me having the normal tests because of what you are taking. For instance, prednisone can help and even mask the symptoms making it look like you are well.
03-09-2009, 12:11 PM
I was going to say the same thing as Sickntired. Bloodwork in auto-immune disorders fluctuate and that is part of the disease process. So, it is quite possible for lab results to be normal at one drawing and come back positive at another. Also, different labs use different values to determine negative and positive results.
When you see you new doctor, make sure to take a list of ALL of your symptoms because a lupus diagnoses needs to fit only four of eleven criteria (and lab work need not be one of the eleven). Unfortunately, most doctors operate under the assumption that Lab work MUST be one of the eleven criteria and if your lab work does not indicate active disease, then they dismiss all of the other criteria that you may be presenting. So, you have to be forceful with your doctors and insist that they look at your symptomology as seriously as they look at your lab results.
I wish you the very best and please let us know how your appointment with your new doctor goes.
Peace and Blessings
03-09-2009, 12:28 PM
i just wanted to say that im in the same boat. Neg. as well as pos. results in my bloodwork. It is very frustrating but just keep on pushing to get a dr whos going to take the time to listen,understand and spend as much time as needed to help you. See if theres a support group in your area too. My husband and i went to our first one sunday and OMG was it Great! They gave us a list of drs in the surrounding area they have been to or are currently going to who are not doubting them. They are happy and well adjusted and they all have similar stories to share. Just like here! I love this forum!!!!!
Just wanted to tell you Saysusie that every time i see your picture i think what a beautiful woman! Just wanted to share that thought with you!!!!!!
03-10-2009, 12:22 PM
Thank you all so much for your comments! One thing I'd like to mention is that i'm not diagnosed with anything but raynauds yet and am not on any medications except for loratadine(antihistamine-10 mg) flonase(50 mcg) and a multivitamin all once daily. No one will give me meds till they know what they are dealing with and my last pcp wouldn't give me any because she said my blood was fine so come back in a year. I see my neurologist tomorrow for my nerve test and a followup so well see what happens. I also see my new pcp thursday so i will definitely stress all of what you said and take a nice big laundry list with me lol Hope you all are well and thanks again! *hugs* -Brit
03-11-2009, 06:18 PM
I had a positive ANA years before I was diagnosed, but have never had positive results on some of the other usual lab markers. It was symptoms that finally led to a diagnosis. So, to repeat the theme you've been reading, lab tests may never be the deciding factor in a diagnosis. Diagnosis may be one of the most difficult things about autoimmune diseases. Hang in there Mommyof1.
05-27-2009, 06:25 AM
I posted this morning because i had the same thing happen and I just came upon your post. I have had positive tests for three years. Last week I went to the Rheumy and he ordered my blood work. I went yesterday for the results and everything came back normal...even though I am still experiencing all the symptoms I have had (with only a few breaks along the way) for the last three years.
My doctor made an observation that my skin looked a bit strange and so did my hair. He has now said that I have Sjorgens (because my eyes, nose and mouth are so dry its awful) and he is now saying unspecified autoimmune instead of Lupus...but at least he didn't send me away saying I was fine.
In fact, he wants me to start on Methotrexate to see if we can get me on a better path. I'm very nervous about that.
Well I hope they get you on the right path and thanks to all who responded to this post as it appears this is a common occurance.
05-28-2009, 12:57 PM
Wow Cathy! To have them be one way for so long and then Bam, the opposite next time! That sounds about right though with this disease!:wacko: Im happy for you though that you have a dr who DIDNT send yoiu away saying you're FINE. WOO HOO for that!!!!:cute: Unfortunately, i am still searching for that!!! But, i AM getting there slowly but surely!!!! Its just funny to me how every "bad" dr ive been to CHOOSES to agree ONLY with my neg blood work and not the positive results! Buttheads! They'll get theirs yet!!! LOl Even my rheumatoid arthritis was as high as 40! The norm is 20 or less! But they say, well maybe you were sick that day! HUH? Are you kidding me?! Sick?! With arthritis for a day?! What a joke! Im turning in a couple to the American Medical Board. HA HA !!!!! :laugh: