Need some direction

Question

I have had pain for months. Nodules on fingers but blood tests show no inflammation. Pain in my hip will come and go when walking. Hurts to the point that I limp. Fingers had constant pain as well as my neck. Recent blood tests also showed Vitamin D defeciency. I am confused how both of my parents have arthritis (badly) I am showing all the symptoms of arthritis ( very miserable most days) but tests for inflammation are negative. Is there something else to check for so that I am not so tired and in pain everyday? I get migraines, I have Crohns and I am so tired almost everyday that I feel woozy. My doctor thought I had Lupus at first, ANA and RA came back Positive a few years ago for systemic auto immune, but now they are saying it is negative and just blurted out fibromyagia without any further testing or curiousity. The pain is getting worse and I am almost reluctant to go to the doctor again because she really acts like she either doesn't care or doesn't believe me. Where in Colorado Springs can I go and find caring doctors who want to know whats wrong and help relieve their patients pain? Now I see why people order medication online...I know something is wrong. Its not kind of wrong, its really wrong and its been wrong for awhile. All I know, and have been diagnosed with is small vessel damage and lesions on brain MRI, Vitamin D Deficiency, nodule on finger, high blood pressure, high cholesterol, Migraine, hypertensive retinopathy, Positive ANA ( from previous tests) Crohns Disease or IBS ( thats another one that changed) I have photos showing the damage from years ago, now they dont see it but the symptoms havent gone away. HELP HELP HELP!!! I have an appointment on 10/22 and feel like I want to go there and yell and throw things to get my point across. What can I do to be really cared for medically?

This discussion is related to unable to find doctor who can help.

kmil1999 · Answer

You sound a lot like me.  I finally got diagnosed with RA because for once when I was in the rheumy's office one of my joints was actively swollen and red.  It gave her a reason to look a little farther.  (Rheumatoid factor was negative, ANA was 1:160 mixed pattern, which they said was not positive).  Before she said it was fibro of course! 

Since the knuckle was finally swollen when I was in the office, she ordered a different test called  Cyclic Citrullinated Pep IgG. Mine was very high.  It is highly specific for Rheumatoid arthritis.

How did you come out with your doctor's appointment?

Hope all is well,
K

Maryham · Answer

You do need to be in the care of a good rheumatologist for a correct diagnosis.  If you are of Northern European or Scandinavian descent, you may want to be tested for HLA-B27 gene.  Your symptoms could be coming from this gene if you test positive for it.  Crohn's disease is one that stems from that, also the Vit D deficiency, the pain in your fingers and neck.  Ankylosing Spondalosis (AS).

karajo · Answer

There are a number of things that could be going on.  You can have a positive ANA and RA too.  If you had a positive RA, then I would lean toward RA.  Not being real familiar with RA.  I do have a friend with it.  She said it was very hard to get dxed.  Her labs were always negative.  But in between dr. visits her hands would swell horribly.  On a day when her hands were extremely swollen she went by the dr. office and demanded that the dr. at least come out in the waiting room and look at her hands.  She persisted and he took one look and dxed her.  W/O a pos. RA.  

Vit D deficiency is very common in autoimmune disorders.  I think the AD makes our bodies to where they don't assimilate vit D properly.  

Do you have sores in your mouth or nose?  On your scalp or just anywhere.  Strange sores that pop up and go away as mysteriously as they came.  

I'm assuming you have nusea with Crohns.  Is that a seperate dx?  That too is an autoimmune isn't it???