Chronic Symptoms with Family History of Lupus but Clean Labs?? Please help!!!

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rnstudent7
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/1/2009 6:00 PM (GMT -7)   
I am searching for answers! Please help!

I am a 21 y/o female with a history of chronic and severe joint pain. My father has RA and my great grandmother on my mother's side had Lupus.

I've been to numerous doctors but still have no answers.

My symptoms include extreme fatigue, hair loss, irritability, severe joint pain that comes and goes, and thyroid lab tests that are off every once in a while.

Back in 2004 I had my CRP, CCP, ANA, and RA factor run. All came back normal except the ANA which showed positive. However, since then I have not had another positive ANA. Even more concerning to me is that my ESR is never elevated above normal.

As far as medications I have been on, there isnt much of a list. In 2004, my doctor recommended that I take 800mg Advil twice daily for 1 year to decrease the inflammation which she said was very visible in my body. I also had a lot of fluid in my knees at that time. Even though I wasn't sure that was very safe, I did what she asked. The Advil had very little effect on my pain or symptoms. Over the years I have come to use Aleve and Advil pretty much daily. My new doctor wrote me a prescription for 500mg Naproxen twice daily (which really is a joke to me considering how much pain I am in), and it isn't doing a thing.

I feel very ignored by the doctors I am seeing because they tend to not take me seriously since my lab work is coming back clean. I'm having a very hard time right now with pain and fatigue and am at a loss for what to do. My most recent lab tests came back today and the only abnormality was a low ferritin (iron) level. Please help!

Post Edited (rnstudent7) : 4/1/2009 7:46:40 PM (GMT-6)


purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 4/1/2009 6:26 PM (GMT -7)   
I have had all the symptoms since my 20's and didn't get dx until I was 41. My labs have never been positive for lupus. But my rheumy watched my symptoms and I had every other criteria except the positive ana. My sed rate is high alot and my iron has been low. I am sure someone else on here will have alot more info for you. I just wanted to share that I have been dx even without a positive ANA. I hope and pray you find some answers soon!
Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/1/2009 8:07 PM (GMT -7)   
rnstudent. How frustrating it can be not knowing what is going on with yourself. We all had some type of problem being diagnoise, some doc. just don't get it.... are you seeing a rhumey, if your not that is where you want go. Hair loss is one thing the doc. should be looking at, also fatigue is a problem with us lupies. I hope you get some answeres soon. Good luck.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/2/2009 7:32 AM (GMT -7)   
Welcome to the forum. I was diagnosed with a normal ana. Maybe you should seek a second opinion from another rheumy. I'm not saying you definitely have lupus, but chronic joint pain is not normal. I'm sorry you are dealing with all of this. Hope you get some answers soon. Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/2/2009 1:41 PM (GMT -7)   
Hi rnstudent,
 
I agree that a visit with a rheumatologist is needed. You have the symptoms of something going on for sure.  Sometimes those labs take time to become positive.  That's what happened with me.  It took a decade of symptoms to finally show that my blood work was positive.
 
I hope you get answers soon too,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/2/2009 3:10 PM (GMT -7)   
Hi rnstudent, welcome. I am sorry you aren't getting answers, we all know how frustrating it is waiting on a dx. I also think you need to see a rheumy, one that specializes in lupus. They are sometimes hard to find, but they are out there. Some of us go to many doctors before we find one that will listen to us and take us serious. All I can say is keep searching for answers and go to as many doctor's as you need to until you are comfortable with their answers.

Hang in there and keep us posted on how you are doing.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 4/4/2009 11:12 AM (GMT -7)   
Hi rn student,
I just joined the website and saw your message. I am 49 years old and was diagnosed this week with lupus based only on the fact that I have severe joint pain and a positive ANA. My chest x-ray also came back clear. My flare-up has been lasting about a month and I am so depleted, both mentally and physically. Also had a negative Anti-Dna test about a year ago and I have no other symptoms but what I listed above. My rheumatologist has decided to go forward with the disease modifying drugs of methotrexate and plaquonil and I also take folic acid, several anti-inflammatories and darvocet daily. My husband calls me the pop and drop lady, just pop a pill and drop to the bed. So far no relief, hopefully after the second dose of methotrexate I should see some improvement (they say). I just want my life back and am so frustrated with the doctors in the past year that I have seen. All I can tell you is to be diligent and forceful when it comes to your health. Get all the information you can regarding autoimmune disorders and go to a rheumatologist and discuss your symptoms. You have to be your own health advocate. Keep us posted as to your prognosis. I'm so glad I found this website, because it really helps to read about others that are in the same position and tells you that you are not alone.

Hugs and angels,
Lynnette
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