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slada
Regular Member


Date Joined Jul 2010
Total Posts : 37
   Posted 8/9/2010 8:02 PM (GMT -7)   
Dear friends,I do not feel well for 4 years.
My ESR is high-36 and sometime 50
My hs CRP is 15,5 and sometime 21,2
My ANA is negative
My RF is negative
My ASO is high 191

Can I still have Lupus even if my ANA is negative?

I have today (anti-dsDNA) test because I ask doctor for more tests.
Do I need any more tests to determinate Lupus?

Thank you so much,hug from Slada :-)

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/9/2010 11:11 PM (GMT -7)   
I have a neg ANA and have lupus. You need to see a lupus specialist to figure it out from medical history not just blood work.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 8/10/2010 6:10 AM (GMT -7)   
Welcome to our forum Slada. Redrose is right that blood tests are only part of how lupus is diagnosed. At the top of our lupus forum is a box "Lupus Resources." You will find that there are 11 criteria used to diagnose lupus. Take note of your positive symptoms and review them with a rheumatologist. I hope everything goes well. Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/11/2010 3:32 PM (GMT -7)   
Hey Slada! Donna gave you some good advice! I am interested in your anti Ds-DNA, please let me know what that is when you get the results! Hope you are able to see a rhuematologist, they are the best ones to diagnose lupus, autoimmune disease, or any issues with the joints, soft tissues, and mixed tissues!

let us know how your results show!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

slada
Regular Member


Date Joined Jul 2010
Total Posts : 37
   Posted 8/12/2010 8:59 PM (GMT -7)   
My dear friends thank you so much for welcoming!
I got some of my blood test yesterday and I have no idea what my results are because this is what I got:

ANTY-ds DNA
Negative:up to 200.0 IU/ml
Equivocal: 200,1-300.0
Moderate positive 300.1-800.0
Strong positive more than 800.0

I am so confused because doctor didn't tell me anything he just told me,you are fine.
I know I am not fine,they are making me crazy.
My ESR and hs-CRP is still very high and I am so scary now.
I am still waiting for Lyme disease test to come back and if I am negative I have no idea what I am going to do.
I want to see crazy rheumatologist and she told me because my RF and ANA is negative-you are not belonging to me any more and you do not belong in my field.
I can't tell you how I feel.....
Internal specialist told me,you have to go to see rheumatologist,rheumatologist told me go to see ENT specialist and ENT specialist told me your blood test is fine,not to me to his secretary.
He want to see me for one year.
I am going crazy,my blood is not ok,why everybody giving up on me?
I am so sad.....
Love Slada

slada
Regular Member


Date Joined Jul 2010
Total Posts : 37
   Posted 8/12/2010 9:02 PM (GMT -7)   
I am sorry my friends it say 34,7 beside ANTY-ds-DNA.....
Than mean I am negative,now I have no idea what to do and where to go,I am lost....

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/13/2010 3:18 AM (GMT -7)   
you need a second opinion, simply put you need to find another rheumy and get their opinion but make sure they are a lupus specialist before you see them. Also may I suggest and Immunologist and an infectious disease specialist just to be safe. You have inflammation as evidenced by your blood work which means all is not well. Now you need a doctor who will listen to your symptoms and forget about other blood work for the moment as they figure out how to get the inflammation under control and find the underlying cause. I nearly died being told there was nothing wrong with me because I didn't even have inflammation markers in my blood work. I got lucky and saw the right doctor on the right day and she saw all the signs and looked at my medical history and dxed me on the spot and immediately began treatment. But that was after more than 14 years of being told it was all in my head. I wish you lived near me because then I could give you the names of a few doctors who I know would care enough to try and figure out what is wrong with you. I live in southeastern Michigan. I haven't met many people in my area with problems like mine.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

slada
Regular Member


Date Joined Jul 2010
Total Posts : 37
   Posted 8/13/2010 9:15 AM (GMT -7)   
Dear Redrose thank you so,so much for suggestion's!
I wish so much I am near you because I feel so sad and lonely in this agony.Here is different it is not like in US,trust me my friend.I have two children and I am so scary for my health.I can't believe how they turning back on me.I have one more huge problem:my doctor will refuse to send me,because I already went to rheumatologist.I don't have lot of chance to see other rheumatologist and I will get in arguing with him probably.He don't want to send me anywhere even he see all my blood test results he just turn page in my file.
He does not care!
I went in Walk in Clinic(we do not need appointment)and one of the young doctor want to help me.He told me I will see infection disease doctor after some blood test but now he does not say anything.I have to ask him,and beg him to send me.
I went to see probably more than 40 doctors and all of them told me it is in my head.I give up last year so start taking antidepressants.
My symptoms are still here!
No they told me,you have anxiety......
Love Slada

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/13/2010 12:51 PM (GMT -7)   
slada,
I have heard that you can have a negative ANA and still really be positive; if you are on steroids or have been in the last 4-6 months.  This is fairly common.  This is just something I have heard.  I was tested when they first wanted to see if what my ANA was doing and it was positive.  They retested and it was still positive, then I went on one month of steroids and they tested me again two weeks in and it was negative.  So the MD was confused.  Finally he said two out of three are positive so I guess it is positive.  Then a couple of months ago, I was tessted again to see if there was any progression and it was positive again.  But the regular MD didn't know if it was because of the steroids.  So I am still not sure if that is really an issue or not.  If you are seeing a specialist you may want to ask about it.  Good luck.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/13/2010 1:02 PM (GMT -7)   
Dear Slada,
 
I am in almost the same boat but it is with MS.  I have Lupus and Mixed Connective Tissue Disease, and also I have two out of three tests showing MS is likely.  But I have having a hard time getting to the right specialist because I don't have insurance and can not get it.  I will pray for you because it is so hard to not have any questions and it hurts even more when it seems like no one cares. 
I had read an article about people with chornic diseases and one of the universal common symptoms is depression.  When a dr can't look at you and tell what is the problem they say you are fine.  Even when you know and he knows that that isn't the case.  But they leave you without answers.  After a while, depression kicks in and it is impossible to get past it without help. 
A friend of mine is a dr and he told me not to be upset about getting on antidepressants.  He said that sometimes we all need help.  I had put off starting them because I wanted to handle everything but I too reached a point where I just couldn't.  So you are not alone, just remember to make yourself smile when you are having a bad day.  Try to stay cool and out of the sun as much as possible and drink as much water as you can stand.
Good luck and God bless,
 
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