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Lupus Symptoms With Negative Blood Work (Page 1)

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I saw a rheumatologist 3 months ago and discussed my symptoms with him and he told me that I had lupus. He did a full blood panel and then did a blood test for lupus. It took about a month for him to get me the results. When I saw him again he said that the blood test was negative for lupus yet my symptoms are getting worse. I break out into a horrible rash at least 4 times a week even though I am on Plaquenil and prednisone. The rash makes me look like a giant raspberry and is extremely itchy. I saw my rheumatologist last week and he told me that he thinks that it might be fibromyalgia though that doesn't make any sense to me. I am extremely sensitive to light. I was outside the other day for about ten minutes and had to go inside because I got an excruciating migraine, nausea, and broke out into a rash. I just don't know what to do, think, or who to see now. Is it possible to have lupus though the blood test is negative? If not, does anybody know what could be going on with me?
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First Helper User Profile kdlee
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replied October 15th, 2007
The most common blood test they use to diagnose lupus is the ANA (anti-nuclear antibody) which is pretty much unreliable. Negative resultsdo not rule out lupus.
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replied May 15th, 2009
Lupus and negative blood work
I have same situation where i have every symptom going for lupus yet the ANA comes back negative so they dismiss it as fibro!! So if a negative test does not rule out lupus why once the docs see its negative do they rule it out??
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replied July 29th, 2012
My first test was positive, due to having 4 blood clots in my lungs.. Second test was negative. Yes you can have it with a negative mblood test. Just means that your not having an episode .. This is what the dr. Has told me. Several Dr's actually. I have sore feet really bad, joint pain every where, migraines, fever , chest pain.. On warfin forever at 43. Feels like my life is over. Crazy
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replied July 30th, 2012
Not sure, mine was only positive in the ER with the PE.. Crazy I do not think they understand this disease yet..
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replied May 30th, 2009
Lupus rash
I'm a 43-year old woman. My symptoms started out as severe arthritis and butterfly rash. I had a positive ANA test, but other blood tests were negative. Doctor won't give me a diagnosis of lupus -- calls it a lupus like disease, although the treatment is for lupus. Have the butterfly rash on my face for the past 2 months and a "sunburn" looking rash on my back and chest that gets better at times but never goes away. Also had bouts of severe itching even though the rash looked better. Rash seems to worsen if I get too warm. I'm on prednisone and hydroxychloriquine. Very frustrated with lack of progress, although the arthritis has pretty much resolved. I'm wondering if anyone has had luck with a gluten free diet or avoiding certain foods.
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replied August 10th, 2012
I have, I'm eating a lot of pineapple as well. Organic eggs and fat free milk, greek yougert No white rice bread or pasta. If I do it's free of gluten and whole wheat. I changed everything, noticed big difference. No chocolate , no alcohol ...

Lot fruit and veggies loe protein ....
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replied May 30th, 2009
Supporter
Like you I had a negative ANA for long time--recently it was positive, either way doesn't mean you don't have Lupus..I also get the rash worse wehn it gets warm and it can itch..Sensitive to light so much that there are times I litteraly put on two pair of sunglasses..A mans glasses over a womans works great..

I do have to avoid oily foods now but think that due to having gallbaldder removed..

I am on Methotrexate and FOlic acid for the Arhtitis and a new drug called Savella for the Firbormyalgia..He hasn't helped with pain but it has given me more energy so that is a huge plus..

Unfortuantely when you get into the autoimmune stuff-nothing ever makes too much sense..It's hard for the docs and for us the pts. because we have soo much going on they ahve to rule out this and that..

My doc says if it looks like a duck and quacks like a duck then it's probaly a duck so you treat it like a duck..His specialty is Rheumatology and he is a true auhority on FIbro/Lups etc..
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replied August 10th, 2012
Who is your dr, mine is not listening...
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replied June 19th, 2009
lupus
It seems that a lot of our stories are the same. My Dr. stated the same thing. I also have fibro and have been dealing with the no positive blood work and months going on a years worth of suffering of sun sensitive. My feet burn so bad I can not stand socks on them however they are so weak/sensitive to everything without covering and protecting them brings pain. I am going to the lupus center in Pittsburgh ,Pa. with a little bit of hope and maybe some answers. where i live i can't even get into a R.A for 7 months and thats 50 miles away Most of the doctors have a hard time excepting my insurance so It seems like i slowly watched my life changed and i have been the only one doing anything to not allow it to go however. I am a single mother of two children who need me.
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replied January 28th, 2010
lupus hard to diagnosis
I am a 59 yr old female who had the exact same symptoms on/off for yrs. I worked as an RN & developed a nasty case of hives for a yr. All lab work was neg for lupus. After I had my son @ 42 I developed Lupus Nephritis & diagnosed with lupus. Since then I have developed transverse myeliis, pericarditis, horrible joint pain & multiple symptoms too numerous to mention. I've been going to a teaching facility finally the lupus has stabilized with numerous immune suppressants. I had been worked up for a stem cell transplant but luckily IV Cytoxan put me in remission I'm so thankful I live in an age where there are so many new treatments & clinical trials on the horizon. I have lupus but it doesn't have me with Gods help & excellent medical treatment I hope to live to enjoy my grandchildren.
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replied February 1st, 2010
Lupas/RLS/MS
I recently tested positive for ANA antibodies. I went to Rhuma. dc. who did further blood work which was neg. I have all the symtoms of Lupas. I have been tested 3 x in last 15 yrs and only now did the ANA show positive. I have been tested for MS but the diagnosis was RLS. I have also 2 other auto-immune diseases (Alopecia, Lichen Schlerosis) My feet hurt, knees, joints w/swelling, chronic fatigue, and numerous other symtoms. The RA Dc. is checking other conditions that may cause the symtoms that I am having. My vision blurrs, I run low grade fever, The doc did diagnose me with fibro. The doc. said with all the testingwould show lupus if I had. Is there a chance that Lupus is just not showing up? I also have sensitivity with direct sun. When I got hot i break into a rash and if I get nicked or scraped it is very hard to heal, it itches. I can't take the old or the heat. I have headaches, muscle pain, joint pain. I thought for sure that the test would show up positvie, then I could atleast deal with it. Somedays I can barely get out of bed. Please respond.. Thank You Ronda
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replied February 1st, 2010
Re: Lupas/RLS/MS
rondaearley wrote:
I recently tested positive for ANA antibodies. I went to Rhuma. dc. who did further blood work which was neg. I have all the symtoms of Lupas. I have been tested 3 x in last 15 yrs and only now did the ANA show positive. I have been tested for MS but the diagnosis was RLS. I have also 2 other auto-immune diseases (Alopecia, Lichen Schlerosis) My feet hurt, knees, joints w/swelling, chronic fatigue, and numerous other symtoms. The RA Dc. is checking other conditions that may cause the symtoms that I am having. My vision blurrs, I run low grade fever, The doc did diagnose me with fibro. The doc. said with all the testingwould show lupus if I had. Is there a chance that Lupus is just not showing up? I also have sensitivity with direct sun. When I got hot i break into a rash and if I get nicked or scraped it is very hard to heal, it itches. I can't take the old or the heat. I have headaches, muscle pain, joint pain. I thought for sure that the test would show up positvie, then I could atleast deal with it. Somedays I can barely get out of bed. Please respond.. Thank You Ronda
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replied February 19th, 2010
Blood panel normal
Im a 31 year old male, My mother had Lupus she passed in 2002. I present with 8 of the top 10 symptoms of Lupus but my blood panel comes back Negative.. I have children and I just want some closure.
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replied February 28th, 2010
good to know im not alone!
OMG I THOUGHT I WAS THE ONLY ONE THAT HAD THIS PROBLEM IM 23 and have been told that i have it then told that i dont and then was re-diagnosed with lupus! i still feel like im goin crazy sometimes. my blood work doesnt match how i feel and my symptoms that according to my mom i've had SOME ALL MY LIFE!
thank you for posting this helps to kno that im not alone in this annoying battle with this sometimes debilitating disease that hard to understand if u dont have it. just because i say im sick doesnt mean i have to look sick!
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replied April 25th, 2010
OMG... OMG... i tot m da only 1 wit diz problm... m 20 now...i had al kindz of tets done.. i have diz thing since da last 3 yrz.. n evrytim i tak a test.. it showz negative...!!! but i clearly hav da symptomz of sle.. dunno wat 2 do...!!
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replied July 4th, 2010
Re: Lupus Symptoms With Negative Blood Work
I know how frustrating it is, I had a renal biopsy 2months ago and diagnosis was lupus nephritis class 3 but then problem is that all my blood works has normal result. I have symptoms of lupus and how can they explain my biopsy? It underwent light and electron microscopy and was really found to have lupus. My rheumatologist is not convince it is really lupus because of the result of my ANA and ANCA, which are both negative. I was then classified to have fibromyalgia only.
Then, again, I was hospitalized after 2 weeks from the time I had kidney biopsy. It was exasperating, I have severe chronic pain every single pain. I was given 75mg BID of Pregabalin but it is not much of a help on my pains. My sodium became low, as well as my potassium and Vitamin D (my vit D value is just 12, wherein the lowest normal value is 30) I have hematuria and protenuria. I developed vertebral hemangioma in my lower spine probably from the chronic pains. I have cystitis and hyperthyroidism as well. I can really understand the frustration. Until now, I have not receive a concrete answer on my situation and has to bear the pain everyday...
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replied July 12th, 2010
Lupus and ms
I went through the same thing as all of you for years being told it was all in my head. I finally found a doctor who would listen to me and she said the reason the ana would sometime show neg and other times positive is because it depends on rather your having a flare at the time of the tests. I also have ms which was dx 3 years after the lupus. If a doctor wont listen to you go to another and another until someone does listen! I still have alot of pain but thats because some treatments for the lupus will interfer with the ms treatments but we are making progress and at least I dont feel like I'm going crazy! Good luck to all of you!
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Users who thank SNICKERS4347 for this post: pines823 

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replied July 22nd, 2010
Experienced User
I'm kind of having same problem. Been dealing with stuff for years & took forever to find a dr who would listen but I have negative bloodwork but have all the symptoms for Lupus. My nuero is thinking Fibromyalgia unless something shows on my brain/neck MRI. It really sucks not knowing for sure what is wrong with me & am beginning to think again that maybe I am just mental & imagining things even tho my primary doc doesn't think I'm mental. LOL.
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replied September 11th, 2010
I know what you're going through! I am 18 years old and show 8 out of the top 10 symptoms. I've been dealing with the butterfly rash for about three years now. In the past, doctors have tried to tell me that it was many things such as staph and other skin problems. Awhile back, I had a chest xray done, and they said I had an enlarged heart (I was also having a flare at this time of the butterfly rash and severe pain.) When I finally got in to do an echo-cardiogram, my heart was back to it's normal size. I'm wondering if my heart was enlarged because of the flare, and by the time I got in for the test, I was no longer flaring, so it showed normal.
Here I am, a couple of years later and I've already been tested for Lupus twice but the ANA just keeps showing up negative. I literally fell at work yesterday because I just couldn't take that next step forward due to so much pain. My whole body aches--everything hurts. My headache has been excruciating for four days now. I went to the ER two nights ago, they did a CT scan of my brain and the blood panel. I've seen four different doctors. The first words out of their mouths always seems to be, "Have you been tested for Lupus before?" I say yes, and then they test me...and I have everything except for the blood word dangling in their faces... I go to my primary care physician on Tuesday and I'm seriously hoping something shows up on the ANA. I'm tire of being in this much pain. It's not the life I want at 18 years old.
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replied September 14th, 2010
My dermatologist said skin biopsy of rash on back indicated lupus. gp wrote fmla as symptoms secondary to lupus. rheumy says no. also said she doesn't do disability. i didn't even ask.
i have rash on upper body, arms, back, neck periodically, super bad dry eye syndrome, extreme fatigue, chronic costocrondritis and cannot get a definite diagnosis.
has been going on for years.
anyone else have similar issues?
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replied February 19th, 2011
Glad we're not alone...
I am a 35 yr old female, single with 3 kids, I have been having the symptoms of lupuss for well over 10 years now, I have even had a slightly elevated ANA. I have been to multiple Docs, rheumatologists, neurologists, physical therapists, dermatologist but none of them will look at all of my symptoms a whole, they just look at everything seperately. I have been given a diognosis of fibro, multiple migraine diseases, osteo and rheumatoid arthritis, anxiety, depression, and several other things. I am in constant pain which none of the previously mentioned docs will treat me for. I have been repeatedly accused of being a hypochondriac, starved for attention, paranoid and even accused of faking to get pain meds. To add to all of this, my 13 yr old daughter has most of the same symptoms, but she had a lot of protiene in her urine, so they referred her to a nephrologist who did a kidney biopsy on her, which did show some abnormalities, she was then put on steroid therapy for a while, the protiene levels are way down now, but she still shows most of the symptoms of lupus. Her nephrologist feels that she may have lupus, he says she deff. has some sort of auto immune disease, but wont treat her until he has definative blood work saying it's lupus. We got very frustrated about all of this, the multiple trips out of town to see this specialist and that doc, doing blood tests and still getting no answers or help of any sort what so ever, so finally her nephrologist gave her a referral to a different clinic all together because they have more advanced technology than he does, and he does understand.
I understand that it's can be very difficult to diagnose lupus, but what I don't understand is why they won't at least try to help us with some of our symptoms.
I mean it has gotten so bad to the point that I was no longer able to work and went on SSI, and I ended up having to take my daughter out of public school and home school her...I live in Wisconsin, does anyone know of a good doc. anywhere in this state or near by that could help us? We are ery desperate.
Oh and I am not sure if it could be related to lupus or not, but I was admitted into the critical care unit at the hospital 3 weeks ago because I was rushed to the ER with what they thought was a heart attack...the nitro helped and got me back to normal, but after all of their testing and what not, they said there was no sign of a heart attack, but they don't know what caused it....any thoughts on this issue?
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replied July 16th, 2012
It's not all in my head
I have been having Lupus symtoms since I was in my late 20s, but now that I am in my 50s and going through menopause it has hit me worse than ever. My family doctor keeps telling me I'm too old to have the diagnosis of Lupus.I have been tested for Lupus 2 times and both came back negative. I am now being told it's some kind of virus I have contacted that keeps flaring up, and I know that I am not making this up,and be so miserable. I have swollen joints that are so stiff I can barely move, fevers, extreme fatigue,sores in my nose and on my scalp. My blood clots all the time and just Last Friday I went in to hospital with chest pains and they had to give me a nitro drip and my blood wouldn't stop clotting which made it hard for them to do tests, and to top it all off my 28 yr old son is starting to show symtoms.
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replied August 11th, 2012
No it's not in your head, I have same problems. Fighting the medical field about a disease they barley understand is hard. Their stressing me out and making me sick more. C
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replied September 19th, 2012
My grandmother was not diagnosed with lupus until her 70's. I believe I have it but the tests keep coming back negative. My mom has it as well. My daughter has Reynauds syndrome and now my 16 son seems to have it. I feel for you.
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replied July 16th, 2012
It's not all in my head
I have been having Lupus symtoms since I was in my late 20s, but now that I am in my 50s and going through menopause it has hit me worse than ever. My family doctor keeps telling me I'm too old to have the diagnosis of Lupus.I have been tested for Lupus 2 times and both came back negative. I am now being told it's some kind of virus I have contacted that keeps flaring up, and I know that I am not making this up,and be so miserable. I have swollen joints that are so stiff I can barely move, fevers, extreme fatigue,sores in my nose and on my scalp. My blood clots all the time and just Last Friday I went in to hospital with chest pains and they had to give me a nitro drip and my blood wouldn't stop clotting which made it hard for them to do tests, and to top it all off my 28 yr old son is starting to show symtoms.
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replied February 23rd, 2011
Wisemom - if I hadn't double checked your username I would have been convinced this was a post I'd written and forgotten about. I'm 36, 4 kids, years of health problems and dozens and dozens of doctors before I finally had a positive ANA. But that was only after several negative ones. I've applied for SSI but I don't know about it yet.

Late January I was admitted with what I thought was a heart attack too. Had a full cardiac workup (including heart cath) and told my heart was fine. During my stay I was sent to ICU with crtically low blood pressure. I was never given an answer as to what it was.

I don't have any answers for you b/c I'm new to this whole process myself. I do have a dx of lupus, but now I don't have health insurance so I can't do anything about it. I hope you get the answers you and your daughter need!

trynny
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replied February 27th, 2011
Trust Your Instincts, Because You Know What is Happening to You
This systematic dismissal of females with these symptoms in a patriarchal system of medicine, such as in the U.S., is appalling. I'm on doctor number 42. 42 told me that 98% of his patients have problems from anxiety. I've been patiently waiting 2 weeks for his friend the NeuroPsych to give me an exam. My GP, I thought my Neuro, and my Psychologist all believe it's physical. My mother is a surgical nurse and she said it sounds like Lupus. I have all of the symptoms and it severely affects my CNS. I am on three anti-seizure medications. I am on NSAIDS, Gabapentin (seizures) and anti-inflammatory for Chrone's/UC. I had a severe breakdown the weekend of September 17, 2010; I have been sick and trying to be diagnosed since July 14, 2008. I'm 24 years old, female.

Symptoms: Excruciating joint pain at the SI joint so I can not walk without excruciating pain (I did not realize that is what I have been experiencing until I had the same pain on my wrist and now on the inside of my right foot-which had a disgusting scaly rash on it for 4 years and finally went away with a steroid injection; petite-mal seizures that I have probably been getting since I was 7, but did not recognize them to be so. When my head started shaking uncontrollably I knew it was a problem. I have a butterfly rash along with rashes galore- I could have 5 at a time, but right now I have a killer 5 incher across my elbow...taking a shower is exhausting, I haven't been able to work in 5 months. I've lost a lot of my hair, a lot of weight, and my appetite has been AWOL for some time. Sometimes I smell food, one whiff of a burger before the bite, and I have to excuse myself from the table. I have little red dots in spots where I am inflamed, it's kind of gross because they're in the middle of a square of small, inflamed veins on my foot. Tingling, numbness, "soda-pop" feeling on the left side of my skull and then an immediate migraine slicing through the middle of my right eye. Nausea, vomiting, gastrofireworks. Tenderness where I am inflamed, even brushing up against it causes me to cry out. The doctor made me jump and howl by pressing with his thumb. I deteriorated in one weekend. I've been to the hospital 320482347 times for excruciating stomach pain (which was probably a seizure), and had to go bent over like a candy cane and shaking.

I've had doctors tell me to be quiet because they know more than me (but spend 5 minutes with me, when I spend all day with me and know my symptoms), that it is psychological (many times), that it is IBS, and, although they can't really define what it is, they can give me medicine for it, which also really doesn't work. I've been on all sorts of things. The best was ondansetron (?)- chemo-grade nausea medication. The Gabapentin works great to control my seizures, but nothing relieves the pain in my left buttock region down to through my leg.

My suggestion to all of you being told it is psychological: Get an evaluation, an MMPI (heck, you can find it and take it right now on the web), or go see a psychologist who will release you to get physical attention because you have been cleared of having psychological affliction.

It's like I say, I don't have my condition because of anxiety; I am anxious because of my condition. Once I have a proper diagnosis and treatment plan, I will be relieved and feel in control of my life again.

Until then, it's a struggle, no doubt. But I'm going to get there. And so are you.

Warmest Regards,
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replied January 14th, 2012
I have been diagnosed with SLE Lupus for over 20 years and after reading many of your posts I am sad to say doctors know very little more now than they did then. I have had negative ana results with symptoms and positive ana results without symptoms. Since the medical community seems only interested in suppressing the symptoms and not curing the disease or finding its cause I am not surprised many of you have had the same experience. I have noticed that many times if I am having symptoms and the ana is negative I am at the start of a flare, when the ana is positive with no symptoms I am at the beginning of a remission. and sometimes the drugs are just working to mask the effects of the flare-up. In some cases the treatments cause more problems than the disease does. Imagine being on steroids for over 20 years. I have learned the hard way a few things that have helped me. Keep written records of all test results and the conversations around them. You never know what little piece of information will help to turn the tide in a flare. Challenge your doctors to think outside the box as far as treatment goes. Since there are no real medications created for Lupus alone ( even Benalysta is a combination of two medications used for other diseases) If you see or hear of a medication that will help with a major symptom you are having ask your doctor if you should incorporate it into your treatment plan. And don't be afraid to challenge any no's you get. Doctors do not know everything they are just very well educated people. And educate yourself about the disease and everything about it. Find a support group either online or in person because having someone to talk to that truly understands what you are facing is invaluable. Try to avoid anything that will cause an immune response allergies, illnesses, medications. The trick is to fool the body into having a normal response not a over the top lupus response. And finally in the rest of your life try to be as healthy as possible. Eat right, get enough sleep, don't smoke, don't do recreational drugs, drink excessively,drink lots of water. I hope these suggestions help.
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