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hanginin
New Member


Date Joined Jun 2008
Total Posts : 13
   Posted 6/9/2008 8:01 AM (GMT -7)   
Hello all, I'm new here and I have no diagnosis for Lupus. I have a long list of other auto-immune problems. One is Sjogren's syndrome which I have been told is like a first cousin to lupus.
I do n't know if I fully believe the non diagnosis lupus though. You see sjogren's according to my rheumy is not aggrivated by the sun.....well I get aggrivated by the sun alright. Even with my 50 sunblock, my UV hat and jacket. Yesterday was a scortcher and I spent allot of time outside. Today I wake stiff, sore, red cheeks and chest, difficulty breathing and horribly tired. This happens all the time.
I have heard that there can be a false negative ANA....
Any thoughts? thanks hangnon 

hanginin
New Member


Date Joined Jun 2008
Total Posts : 13
   Posted 6/9/2008 8:06 AM (GMT -7)   
Me again maybe i'd better come clean about all the other stuff might help...I have hypothyroid, addison's disease (adrenal gland doesn't work) auto immune ovarian failure, primary biliary cirrhosis (liver), fibromyalgia. hangnin

joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/9/2008 9:42 AM (GMT -7)   
hanginin.. Welcome to the forum, There are people on this forum that have sjogrens, they could answere you on that one. I have a fatty liver which they keep an eye on. I aslo have hypothyroid I'm on synthroid,with alot of other meds.and problems. 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.     
 
 
 
 


Stones
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 6/9/2008 1:25 PM (GMT -7)   
just wondering Joinery, how did you discover the fatty liver issue?
MCTD, Polycystic Kidney Disease, Fibromyalgia - Diagnosed January 2006

Plaquenil 400mg, Methotrexate .8 CC injections, Folic Acid, Prednisone (off and on), Lexapro, Cardizem 360 and Diovan 80 mg (to control high BP related to PKD)....oh yeah, and Nasonex too for allergies. Lyrica (prescribed for Fibro).


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/9/2008 2:09 PM (GMT -7)   
Hi Stones, By blood work enzyems were to high, then had ultra sound done. That shows the fatty liver. 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.     
 
 
 
 


hanginin
New Member


Date Joined Jun 2008
Total Posts : 13
   Posted 6/9/2008 5:38 PM (GMT -7)   

Hi again, I was told I had "a fatty liver" by a hepatologist and later was told it is PBC. Is that the same thing? I was monitored closely for about 3 years but I tired of driving 2 hours to the specialist so then I was referred to a specialist closer to home. He told me yes there may be something going on witht he liver but for now I was fine, and could do with a yearly check by my gp. I had a liver test done a few weeks ago so I guess everything is ok. Do you know if it is possible for PBC or fatty liver patients to lose weight? I went through a bad flare last year and my prednisone was doubled for 2 weeks, I gained about 12 lbs through it all and am having a terrible time getting it off. i saw a liver specialist on tv and he said fatty liver patients almost always are unable to lose weight. What's that about? Thanks

 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/9/2008 6:01 PM (GMT -7)   
Hi Hangingin!!

Welcome to the forum!! I'm sorry I won't be able to answer most of your questions. *sigh*

Sorry you are dealing with all of this and still waiting for a lupus dx.

Actually Sjogrens can cause a LOT of the same issues as lupus does. That might account for the negative ANA. Also, you don't need a +ANA for a lupus dx. See the link at the end of my signature "4 of 11" for more info on how a lupus dx is made. The other links are informative as well. Help yourself!

Lots of member here don't have a firm dx of lupus. What is more important is that your doctor is treating your symptoms. You really should be seeing a rheumatologist if you aren't already seeing one. That is the doctor that can really put it all together (the blood work and symptoms and nuances of connective tissue disease). It really requires a specialist. The fact that you have liver involvement will usually also require a specialist in that field as well. Some of us have multiple doctors to deal with all the facets of the overlapping issues.

I hope you find lots of good info here. Please feel free to ask any other questions.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/9/2008 6:58 PM (GMT -7)   
Hi hanginin, I have a hepatologist and G.I. Doc. I just seen my hepatologist 2 weeks ago, liver is fine. Seen G.I today really need to lose weight, if I don't it can cause cirrhosis, being on preds. makes it hard to lose weight. Which I'm not on right now so differnally going to take their advise. My sister and sister inlaw both have fatty livers and their doing fine they both walk, and go to the fitness center but when you have problems like I have it's hard to keep up with them. So just trying to do my own thing. 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.     
 
 
 
 

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