A Little Confused

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LovesGlass
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/20/2009 8:27 PM (GMT -7)   
Hi All,
 
I'm new here, but not new to feeling bad.  I'm hoping for a little insight, and advice.
 
I am 45 years old, and up until five years ago, the picture of health.  I always ran circles around everyone, with everyone always telling me to slow down...I long for those days again :-) One day at work it hit me like a ton of bricks.  I sat at my desk at work literally scared at how fatigued I was.  It was something I could have never imagined.  As the day went on, it got worse and I called my doctor.  (I never went to the doctor, so this really concerned my husband)  Other symptoms at that time included a few joint aches, which I attributed to "getting older".  She did a lot of bloodwork, and my ANA came back 1:160.  She did more specific tests for Lupus (DSDNA??) which was normal.  Good!!  After about three months, I was feeling pretty good again.
 
about nine months later, it hit me again.  This time was bad again.  I spent another three months doing nothing but coming home from work and going to bed.  I cound not even get through the work day without going to my car to lay down on my lunch.  My doctor repeated my labs and the ANA was still 1:160.  Since then, over the past three years I have developed very painful joints, reoccuring fatigue, rashes (some spots like dark red under the skin spots on my cheeks, other across my neck and chest), tingly hands and feet, stomach troubles, foggy head, super sun sensitivity and reoccuring mouth sores.
 
I just went back because I have developed dry mouth, and hardening of my salivary ducts (possibly stones).  She repeated my labs and the ANA count is 1:640 and I have high calcium levels.  I still do not have a diagnosis, which I understand that auto immune disorders are not easy to pinpoint.  I asked her if my ANA count elevating while I was presenting symptoms concerned her.  She said that it is a "dynamic number" and will fluxuate at will.  What the heck does that mean?  If the ANA count is irrealevant, why has she tested me for it so many times?   
 
I'm frustrated, and after five years, more confused than ever.
 
Thank you, any insight is appreciated.
 
Many blessings you all.

Post Edited (LovesGlass) : 3/20/2009 9:33:52 PM (GMT-6)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/20/2009 8:44 PM (GMT -7)   
Hi LoveGlass,
 
Welcome to the forum. I hope we can help you find a direction and offer advice or our own stories.  We know how difficult it is to lead a normal life and then to all of a sudden have that life disappear.  The sense of loss, and loss of identity is hard for us.  For me anyway. I'm still getting used to my new life, 9 years after my diagnosis. 
 
Your symptoms do sound autoimmune in nature. Your ANA is a strong positive which means you do have antibodies in your blood. It fluctuates a lot.  One day you'll be positive, the next negative, or the number will change.  Most people with suspected Lupus will have a positive ANA in your ranges.  Others will have a negative ANA.  Your doctor is right, it will fluctuate.  But when it's positive at your number, it makes doctors perk up and take notice.  I was diagnosed at an ANA of 1:320.
 
The next thing you need to do is get a referal to a rheumatologist.  They specialize in rheumatic diseases, which Lupus is one of.  They are the only specialists who can make a Lupus diagnosis and start treatment. Your pcp can get you a referal.  If you don't like the rheumatologist, don't waste time with them. Drop them like a sack of spuds and move on to another one!  It's not uncommon to see more than one or two "rheumies".
 
Also, keep a diary of all your symptoms, even ones that don't seem to fit the puzzle (you'd be surprised).  Take pictures of any rashes you get. 
 
We know how frustrating this part is. Please ask any questions you need to okay. 
 
Blessings
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/21/2009 10:25 AM (GMT -7)   
I had the same experience with my job. I had been diagnosed but was in total denial. The fatigue I felt completely scared me to death. I am no longer able to pull off the denial thing. I have multi organ involvement and have never had a positive ana. You can't put too much weight on the lab values with lupus. There is no 'hard and fast' test to diagnose with. What's most important is what you are experiencing. I agree wiyh Ginny, you need a good rheumatologist. Dont let them intimidate you or brush you off. Many, many people go through several rheumy's before they are diagnosed and properly treated. God bless you, Judy

LovesGlass
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/21/2009 1:33 PM (GMT -7)   
Thank you for the advice and information. I think I will ask for a referral as you have advised.

Is it common for those with lupus to have a negative DS-DNA result? My doctor feels it is definately auto immune, but not lupus since the DS-DNA is negative.

I also want to say that you all very much have my respect and prayers. It is wonderful that you share your experiences to help and support others.

Lisa

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/22/2009 6:56 PM (GMT -7)   
Hi Lisa, welcome!

Ginny and Judy gave you great advise! It is very common to have a neg DS-DNA, mine was but I had other labs that were positive. We cannot stress how important it is to find a rheumy that specializes in lupus, there are a lot of rheumy's out there but they may not be up to date on lupus.

I was like you, the fatigue hit me like a ton of bricks after getting over strep throat, I went to the doc and he saw how desperate I was to get some answers, he ran an ANA, it was positive and he sent me to a rheumy, I saw a total of 3, so it's very common to see more than one.

Take a look at this link, it list 11 symptoms if you have at least 4 doctors will "usually" consider lupus:

www.lupus.org/education/topics/outcome.html

I pray you get some answers soon so that you can get on a good treatment plan. Take care and please keep us updated on how you are doing and ask more questions if you have them.
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)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/23/2009 6:43 PM (GMT -7)   
I also had a DS-DNA! I did have an elevated RF, SED and ESR. The antibodies were fond in my kidneys on biopsy. Judy

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/24/2009 9:57 AM (GMT -7)   
meant to say a negative DS DNA! Judy
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