Newly diagnosed or not?

[justmel78]

Hello all. I've been experiencing multiple symptoms for many years that I've felt most doctors thought I was crazy to bring all of them up. I had mono in hs and therefore have had Epstein barre since then. I'm currently 38. The past 6 mths I was feeling progressively worse, more currently extreme fatigue, body aches, low grade fever..difficult getting through the day of work. On top of that I've had reddening of face immediately after sun exposure, gastrointestinal issues getting worse and most recent scarring of lungs and thickening of lung bases. Had bloodwork done which came back positive ANA and positive Anti-ssb 3.1. I saw a rheumatologist who seemed baffled at my symptoms and was looking for more physical signs (swelling of joints, butterfly rash) nothing of which I currently have. She diagnosed me with Sjrogens and had me do the new Avise testing for CTD along with prescribing Prednisone. 1 week later I'm not feeling better and to my surprise all the tests came back negative. She is weaning me off the prednisone saying it should have worked by now and will see me again in 3 mths!? I'm at a loss. I'm afraid come next week I'll be feeling even worse again and have no idea if I'm diagnosed with anything now? I was going to make an appt for a 2nd opinion as I feel like my symptoms were dismissed. Any help is appreciated.

[sickjojo]

I can only offer you support as I am in the same boat without a diagnosis , also the crazy thing , my doctor told me I was mentally ill and it was all psychological symptoms , so I really do know how you feel, I know you can have lupus with out butterfly rash or swelling joints so don't despair you could still have lupus , I wish you luck keep us posted !!

[Mom2four85]

My GYN is the first who mentioned Lupus to me way back in 1998 when some of my first symptoms started after having a very serious infection (Group B Streps turned septic).
I've had a neg ANA throughout the years but all kinds of symptoms but still no dx because most dr's go by the thinking Pos ANA is Lupus, but not always true.
I developed Vasculitis in 2014 and sent to a dermatologist who was appalled that no dr had dx me with Lupus and did biopsies which were positive for SLE. (I forget the terminology)
Maybe a 2nd opinion and ask for biopsies that may help with a diagnosis?

hope you get some answers, I know for me it was 17 years of frustration.

[TheLightSeeker]

The Avise testing for CTD is NOT foolproof by any means!
You were likely one of  the 22% of patients where CTD is missed, since this test has a sensitivity of 78%.
Look into underlying factors, such as
low thyroid FUNCTION (emphasis on the FUNCTION) which can only be ruled out with Free T3, Free T4 and Reverse T3 thyroid testing.
Most doctors do not know that one of the vital functions of the thyroid is
activating enzymes, responsible for cellular debris removal.
When cellular debris remains in the body it causes auto-immune reaction
and when chronic, the onset of auto-immune conditions is inevitable.
Other factors to look into are nutritional  & mineral deficiencies.
A complete nutritional panel is vital!
Tissue Magnesium (not serum)
could be low.
For this you need to see a holistic practitioner.
Best wishes,
Niko

[cmropen]

Sorry you are going through this and feeling frustrated. It's understandable! Getting a second opinion may be something to consider or seeing an specialist such as an immunologist, endocrinologist, GI doctor (for GI issues) and dermatologist for the skin symptoms.  

[justmel78]

I have been seeing a GI doctor for years however all the other specialists would be unnecessary as my symptoms all coincide with one another. The positive bloodwork and symptoms are treated by rheumatology.