stuck in limbo land

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Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 11/6/2013 9:59 AM (GMT -6)   
Hi all,
 
I posted on here a while ago when lupus was first brought up as a apossibility and appreciated all the advice and support (so I am back :-) ).  I got to see a rheumy on Friday and the good news is she actually believes that something is wrong--and that's a first! My symptoms are as follows: pleurisy (which I think I have again now thanks to a nasty cold), chronic costochondritis, eye inflammation, cotton wool spots on my retina, mouth sores, severe fatigue, joint pain (but no swelling), headaches, shortness of breath upon exertion, skin issues, and I am sure others that I cant think of right now. 
 
The rheumy thought lupus, but also listed vasculitis or sarcoidosis as  possibilities. So she ordered a ton of blood work and a chest x-ray. I got a lot of the blood work back yesterday and everything looks ok for the most part- negative ANA, blood counts all normal, sed rate is fine. My c reactive protein was slightly high, and I guess it was in March too but no one ever told me. and very low vitamin D.
 
So do these results rule out autoimmune? Does anyone else have low vitamin D, and does that cause some of these symptoms? I am eagerly waiting to hear back from the rheumy (probably Monday) after the more specific blood tests for vasculitis come back from the outside lab. She did make it sound like she was going to treat me with SOMETHING no matter what--but she was also pretty sure I had lupus.
 
I know no one can tell me what I have over the internet, but I am wondering what the road to diagnosis looked like for you. From what I understand this limboland thing is common, so how did you get out of it?  confused   
Jamie

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/6/2013 3:21 PM (GMT -6)   
You can have lupus without a positive ANA. Did you see the 11 indicators for lupus list? You only need to score 4 out of 11.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 11/7/2013 3:29 PM (GMT -6)   
Thanks Joy :)
 
I did take a look at the list. I have 4 out of the 11 indicators---but all symptom related none of the blood work ones. I am not sure about a 5th one- I do have a lot of joint pain but not swelling, redness, or warmth. The next time I get the butterfly rash I will have someone take a picture so I can show her. I am hoping this rheumatologist stays true to her word and will do something for me even in the absence of confirming blood work.  It has been my experience with most doctors that once the blood work is normal they tell me its all in my head and I am just too anxious. Nothing to do but wait until she calls me Monday....
 
I also am having an asthma flare for the first time in 2 years (was scared b/c I thought it was the start of pleurisy again).  Not sure if its related, but I needed to get a new inhaler because its been so long since I used mine!  
 
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