every symptom of lupus but negative ana. cant get dignosis or treatment!

can you have lupus with negative ana and normal antibody tests?
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does anyone live near lake city fl know any rheumy dr's who will diagnose without positive ana? - 0.0%
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what pain meds are used for lupus pain? - 0.0%
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can a primary care diagnose lupus? - 0.0%
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does anyone else have high anticardiolipins igg without pos ana? - 0.0%
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can you be diagnosed with symptoms only? - 0.0%
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what meds are used to help lupus rash? joint bone and muscle pain? - 100.0%

 
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Samanthap6
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/21/2011 4:23 PM (GMT -6)   
cry mad hi I am new here and I love reading all these posts! You all help me to keep searching for help! I have had symptoms for 12 years now! After I had my 1st child at 16 I broke out with a rash all over my face,legs, chest, and back. After many trips to specialists and er's the only thing that helped was prednisone packs. After I finished the steroids the rash would come back. This went on for 1 year or more. Finally I learned how to keep it under control by avoiding the sun and hot water on my face. I still have the rash on my hands and fingers also I get it on my legs but I have butterfly rash when out in sun or stressed. I get hives on chest,back, kneck,and face. It feels hot like I have a fever. I have severe rahynauds. My hair falls out in globs, severe fatigue, can't hardly get up to take care of my 6 children my husband helps alot! Constant severe joint, muscle, and bone pain. Very stiff in the mornings can't move fingers or walk. Severe hip pain recently. High liver enzymes, liver cyst, thyroiditis, elevated see rate and cross for years! Negative Ana! Low rbc, high and low wbc. Leukomalacia spots on brain. Get very weak and almost passout in sunlight and in Walmart? ???? Severe daily migraines for 15 yrs. Nothing helps! Gastritis, esophogitis. High anticardiolipins igg. Much more! I need treatment and pain relief bad! Anyone live near lake city FL know of rheumy who will dignose without positive ana? Please help!!!! Might i add the rheumy told me i was basically tired and have anxiety and depression! I just need a sleep study! Can you believe that! I don't see how depression anxiety and no sleep causes all this! Im in shock! How do these people become dr's? All they have to do is look up lupus on the internet and they can c what the symptoms are! Doesn't take a rocket scientists!

Post Edited (Samanthap6) : 6/21/2011 3:59:08 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12431
   Posted 6/21/2011 8:14 PM (GMT -6)   
The first medicine used is a DMARDS like planquinel. A rheumy usely diagnoses lupus. Yes, you can have lupus without positive ANA. I was diagnosed with symptoms only.
The reason you pass out in Walmart is because they have special skylights in the ceiling that let in UVA/UVB light. Also they have fluorescent lighting.
I'd find a different Rheumy.
Joy

Samanthap6
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/21/2011 8:42 PM (GMT -6)   
Thank you so much for your reply! And thanks for all the advice and information! Im trying to find a new rheumy. But its hard to find one in my area who accepts my ins. My pcp has to refer me to a specialist and now my pcp is no longer at her office! She left town! But thanks again. I wish i had your rheumy!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 6/21/2011 10:43 PM (GMT -6)   
Samantha, lupus can be diagnosed without confirming labs. Keep in mind that lupus is the disease with a 1000 faces and often mimics other diseases.  Some patients can take months or even years without a confirmed diagnosis.  Labs almost always show up but not initially...they are, to use economic terms, lagging indicators.
 
It sounds like your doctors are not experienced and are treating it like it is a bacterial infection...take antibiotics for 10 days and everything will be ok.  That is not how lupus works.  Short term treatment do little and confuse the issue.  Treatment is long term and some will need some sort of controlling med indefinitely.  No doc can predict how a given treatment will work.  sometimes the initial treatment works but often it takes many tries to find the right treatment.  Plaquinel is often the first for mild cases and pred for more severe ones.  There are many other possible treatments and all of them are "off label."
 
Get a second opinion with an experienced doctor.
 
Bill

Samanthap6
New Member


Date Joined Jun 2011
Total Posts : 4
   Posted 6/21/2011 11:19 PM (GMT -6)   
Bsime said...
Samantha, lupus can be diagnosed without confirming labs. Keep in mind that lupus is the disease with a 1000 faces and often mimics other diseases. Some patients can take months or even years without a confirmed diagnosis. Labs almost always show up but not initially...they are, to use economic terms, lagging indicators.
It sounds like your doctors are not experienced and are treating it like it is a bacterial infection...take antibiotics for 10 days and everything will be ok. That is not how lupus works. Short term treatment do little and confuse the issue. Treatment is long term and some will need some sort of controlling med indefinitely. No doc can predict how a given treatment will work. sometimes the initial treatment works but often it takes many tries to find the right treatment. Plaquinel is often the first for mild cases and pred for more severe ones. There are many other possible treatments and all of them are "off label."

Get a second opinion with an experienced doctor.


Exactly this dr has no clue what he is doing in my opinion! They act like im making all this up! They wouldn't even look at my labs i have had done through the years when i was flaring. They made this diagnosis through lab work i had done in the er 3 years ago. I tried to explain that i had a ton of recent lab work that showed elevated sed rate, elevated crp, low rbc, high anticardiolipin igg, low and high wbc. Elevated liver enzymes, all this blood work has been repeated over and over and it always showed these abnormalities every time. They seen me this one time and did nothing but order more labs which they claim has all come back normal! But when i asked about the antibodies tests they ordered he said what antibodies test? I said the ones you ordered! He had to look in the computer. Then said the results to them aren't back yet! Well i thought there is nothing wrong and my labs were all normal! I couldn't believe what i was hearing! I was seen by a endocrine dr for a thyroid nodule she is the one who sent me to the rheumy. She sent me to the rheumy because she did a thyroid u/s to check the nodule and said i have thyroiditis probably from the lupus attacking my thyroid! I don't know what's going on! I also have had 2 false positive hep c test! No one knows why. I think the lupus is attacking my organs! Im very sick yet no one seems to believe me! I have to sufffer in pain everyday and i mean severe pain because i cant get a diagnosis! But all i can do is put it in Gods hands and pray He sends me a dr who will figure out i have lupus!

Post Edited By Moderator (Lynnwood) : 6/22/2011 7:45:29 AM (GMT-6)


Gingersnaps
New Member


Date Joined May 2011
Total Posts : 3
   Posted 6/22/2011 1:22 PM (GMT -6)   
Wow, I'm so sorry that you are having such a hard time!

My advice would be to focus on finding a doctor willing to try the autoimmune treatments without a diagnosis, and see if you respond. There are many people without a clearcut diagnosis who are under a rheumatologists care and are helped by plaquenil, etc. Some people even get these medicines from a GP.

I'm no expert but I think that getting a lupus diagnosis with a negative Ana is hard sledding. I myself have a positive ANA and I am diagnosed with sjogren's, and even though I have multiple lupus symptoms including annular rashes in my past, the doctor hasn't diagnosed it. He probably won't dx until my anti DNA turns positive. I know for sure i have sjogrens but i think its secondary to lupus. But, I am already on plaquenil and prednisone so I suppose it doesn't matter at this point. But anyhow, my rheum hesitates to say I have it for a few reasons. For one thing he wants to be pretty sure because it's a life altering diagnosis. You'll never be able to get, or afford if you do get, insurance again outside of group insurance. Life insurance skyrockets, everything does. Sjogrens does this too but probably less so than lupus. I know that isn't a huge concern when you are very sick but Doctors consider all of this before deciding to put the lupus label on someone. And, I'm rambling, sorry! I guess my point is many doctors will treat based on symptoms alone, I guess the key is finding the right doctor. I don't live in Fl but if there's a lupus support group in your area perhaps you could look it up online and get some advice on which doctors there are more empathetic and treat symptoms, etc.

Your journey has been a lot like mine was, by the way. After my first child at 19 I started with the terrible rashes, hairloss, fevers, all of it. I was checked for everything back then but nobody would listen to me until i had both hands and feet inflamed with arthritis after the birth of my 4th at age 31. I'm sure you've noticed that we get worse after each childbirth. That is a hallmark of autoimmune problems!...Good luck on finding a doctor, you deserve to get some relief!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1224
   Posted 6/22/2011 4:33 PM (GMT -6)   
Many lupers have a negative ana but do have lupus.  It is only one of many diagnostic criteria used to get a diagnosis but it can fluctuate or lag clinical symptoms.  Even a positive result does not mean you have lupus.
 
This is one of many reasons it can be difficult and take years to confirm a lupus diagnosis in some cases. 
 
 
Bill
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