New here* Positive ANA/Bone Scan & unexplained Rheumatoid Process

Hello. I saw a rheumatologist in the last few months and had the entire work up.  I've been hurting in my hips and other bones since 1996 and never knew why. I still don't.  My ANA was positive but low.  All other labs were negative including Lupus.  I also had a bone scan and it was as bright as a Christmas tree.  There was a lot of inflamation.  The doctor says my joints aren't visably swollen but hurt when he presses on them.  I hurt in my hands, feet, elbows, hips, shoulders and wrists and knees.  He put me on Placquinil and it helped but my pain was still there, so he took me off.  I've recently had shoulder surgery and ortho doctor cleaned out arthritis from my shoulder.  My rheumatologist won't diagnose me with RA.  He and his colegues say my problems and symptoms don't add up.  I also have Celiac but am TOTALLY gluten free and have been for years and I have Menieres and Barrette's Esophagus.  I also have ulcers in my nose.  No moisture at all in my nose.  It's been like that for 2 years or so.  I have unexplained Lymphanopathy.  I now have a blind spot in my left eye.  That came on all the sudden.  The eye specialist can't find anything and finally said it must be vascular.  The Rheum and my Internist are saying it's an inflamatory process but they aren't sure what. He is suggesting I go to the Rheumatology department at the Mayo Clinic.  I have decided to make the trip.  Does anyone have similar symptoms and story?  Any help, encouragemnt or suggestions are appreciated.  This is no fun as you all know!   

I'd go to the Mayo Clinic. Have you been to Lupus.org to see the list of diagnosing lupus? You just have to meet 4 of the 11 indicators. Positive ANA is only one of the 11.

Plaquenil does not get rid of all of the pain. It's not a pain killer. It prevents the inflamation from getting worse and it takes 6 months to fully kick in.

Couchtater, thank you for your response. I have seen a list of Lupus criteria but my lab work for Lupus came back negative so my Rheum doctor said negative. I wanted to stay on the Plaquinil but he said no. I then told him I thought it wasn't working because I still had pain. Can you still have Lupus even if your lab work doesn't show positive for it?

He is suppose to be one of the best around here. It takes a year to get in to see him. I guess that doesn't always mean something. I'll just have to hope Mayo Rheum doctor has better information and some answers. I've gone years with no answers and no diagnosis. I'm sick of hurting and I'm tired of being tired and falling asleep during the day. The pain is terrible as you all know. I didn't mention in my first post that my Epstein Barr titer has been positive since 2009. I can't shake that virus. Don't know if that effects any of this.

Saw my rheum who sent me for MRI of my left hand due to terrible hand pain bilaterally and X-rays of all joints bilaterally. All negative.
8 weeks ago I had rotator cuff repair surgery and now have a frozen shoulder. My orthopedic surgeon says I should have progressed by now and the pain should have let up. I am in intense pain. He's going to do a bone scan monday to make sure theres no injury before he does an epidural in my shoulder. If bone scan is clear, I'll have the epidural/nerve block. He is worried that I have RSD- Reflex Sympathy Dystrophy. If this is what's in my shoulder, I wonder if it's also in my hands.
I have to use my knees to drive because it hurts to have my hands on the steering wheel. I can't open things, and my hands hurt all the time. He said if it is RSD, he'll have to act fast.
This may also explain why my rheum can't find anything on scans. FYI-my ANA is positive and my full body bone scan showed uptake in all joints bilaterally, arthritis. My rheum won't diagnose me because he said there's no inflammation.
Has anyone ever heard of RSD?
WORRIED

Hi I am glad you got a diagnosis and now your able to start a
treatment. I have not done Methotrexate. I hope this drug will
help you.

Shelby, your symptoms are fairly similar to my own. I have been ignored by Dr's for ten years. Can I ask how you got into the Mayo Clinic for two weeks? Where do you live? I am in Arizona and apparently there is no Rheumy at our clinic? I am trying to get a second opinion but now I am waiting until April for a new Dr. app. All the good Rheumy's are no longer taking patients.

I was dismissed after five minutes by the rheumy I saw last week. I have an app in April to see a new one for a second opinion. My current symptoms are listed below. All of these symptoms have crept up on me over the last 11 years. It all started with my lower back. I am a discouraged, I do not want to have rheum. I just want to know whats wrong with me so I take a step foward. I think since I am only 33 I am ignored by pain management and I am ignored by orthopedics. They want to just send me to PT or give me shots. PT has not worked for my back or knees. I am rambling now. I am so happy for you that you were able to get into the mayo clinic! :)

Current symptoms:
Scaly itchy patches on scalp
Knee pain both knees (had cortisone injections two weeks ago-swelling still continues)
swelling every day in knees fingers and face mostly in the morning (this is scaring me)
some stiffness and in fingers
Achy and flu like symptoms almost daily
lower back and hip pain
Ankle weakness and pain
Elbow's are sore and arms go numb when sleeping

I don't have Psoriasis (that I know of). However, I am beginning to think Psoriasis Arthritis. I have the itchy patches on my scalp that come and go. All my blood work and x ray's are negative. I am 33 with major bulging discs (no injury) and knee swelling and pain with some wear and tear. Its all just strange