lupus? or other autoimmune disorder

I have had a rash on my face for the past two years that flares up every five days or so. Initially it is itchy then i have small spots that have dry skin at the base and some are filled with small amoounts of fluid. The rash is spread across my nose and cheeks and is very silmilar to lupus rash or rosacea .If i use a sunbed a get round dry patches on my arms and back like excema that dont tan. I have persistant kidney stones. Joint pain in knees wrist ankles. i have ibs/celiac disease symptoms. I have flares of dry eyes mouth and lips and no amount of fluid intake resoves this. Recently i have also been getting tightness/pressure and sometimes pain in the center of my chest it also feels like sometimes someone has their hands around my throat. I also get re occurring mouth and nose sores lasting months.
Tests
I have had tests for celiacs disease IBD and lupus all negative although my reumatoid factor was high and i also showed low sodium levels.

Can anyone give me an idea what is causing this my doctor does not know and has suggested repeat tests in 3 months time.

[Joni686]

Hi Tara,

You said you have been given all lupus tests.  Were you tested for ANA?  What exact tests did he/she do that were negative?  If you don't have a copy which many people don't think of, get a copy of your blood work and start a folder so you can take it with you to any doctors visits.  Many autoimmune diseases can cause what you have described or you could be having rosacea and have any allergy to the sun.  A friend of mine has a very strange allergy but if she is in the sun and has a leather strap from a purse over her shoulder, the leather along with the sun cause a major breakout. I have a malor rash 50% of the time but it never hurts or gets scaly but that's me.  I am also  thinking about Sjrogrens.  Try googling it and read about it a bit, see if anything matches up with your symptoms.  The type of tests that were run on you and were negative is very important.  Can you please send a list of what they ran?

God Bless
Joni

[TrudieC]

Negative tests don't mean you don't have something.  My bloodwork keeps changing - positive ANA one time, negative the next, and positive RF one time and negative the next.  I have a malar rash and my doctor is treating me with plaquenil which is the first line of treatment for both Lupus and RA and because I don't have inflamed joints they are thinking Lupus at this point.  Keep getting tested.  The answers will come eventually.

[Joni686]

Hey Trudie girl, how are ya?  I hope youre doing well.

Lupus is so strange because everyone describes it differently.  I have joint pain with lupus.  I have been negative for RA many times but I could swear I have both at times the way my joints hurt.  I missed one day of Cellebrex and I thought I was going to die.  Are you doing ok on the plaquenil?  I can't take it.  I had a bad reaction.  Take care and talk to you soon.  God Bless.

Tara, like Trudie said, answers will come but it takes a while for everything to show up on these diseases.  I would just keep a positive outlook right now and believe you will get better.  I would like to know what blood tests they did if you don't mind sharing.

Joni

[TrudieC]

The plaquenil is helping and I am doing well with it.  It's the fibro that is causing me grief lately but am luckily not in much of a flare just now.  Waiting on my last round of blood tests and hoping it gears us closer.  Thanks for asking Joni!

[OldFatChick]

The dry mouth, lips and eyes sound like Sjogren's to me (I was recently diagnosed), Sjogren's can also cause joint and organ issues.  They have several tests Schirmers, Anti-Ro, ANA, SS-A, SS-B, etc.  My parotid glands (the ones right in front of your ears) are very swollen.  Sometimes you have to insist on tests if the doctor says he/she doesn't think you need it.  You are the one who best knows how you feel. If you know something isn't right, you just have to keep pushing until you get the tests and answers you need.

[Joni686]

"If you know something isn't right, you just have to keep pushing until you get the tests and answers you need."

O.F.C.  YOU ARE SO RIGHT !  PERFECT ADVICE FOR ALL THOSE NEW TO CHRONIC ILLNESSES.