Curve ball/confused!

Hi folks,

I had my second visit with my Rheumatologist yesterday and I feel like he threw me a curve ball. The last visit he said my labs pointed towards Lupus but my symptoms towards RA. So he ordered more labs. MY ANA results were very high and my iron levels are very low. So now he's thinking it's an incomplete form of CREST syndrome overlapping with lupus. I have no CREST symptoms other than joint pain and extreme fatigue. He prescribed Plaquenil and ordered more labs for vitamin levels and iron count and see him back in a month. He thinks it's what could be causing my anemia or it could be Thalassemia minor. I've been anemic all my life. I now these type of issues are hard to diagnose and I need to be patient, but still, it's very frustrating 😔

4 Replies

oldestnewest
  • Sorry its still inconclusive. Re. the anaemia - have you ever been screened for coeliac disease? Because it causes malabsorption problems, anaemia is one of the very common symptoms of it, as is fatigue. Its also another autoimmune condition, so often goes hand in hand with other autoimmunes. I complained of fatigue, and also had low iron, folate and B12 levels for years before any doctor thought to test me for coeliac.

  • I know its all frustrating, i have been under haemotolagy, rhumatology for 5 yts now endeocrine for the last year, i am on methatrexate, hydroxichloraquin, sulfazalzine, naproxen steroids, painkillers,meds to stop me being sick, folic acid to combat side effects of methatrexate, IAM SICK OF IT ALL, doc say they have no idea whats wrong with me, bonescan shows inflamation in every joint of my body but ESR levels are normal ??, life is crap at the moment and painful

  • I know there is sometimes so much connective tissue overlap that some people don't get one name for their disease(s) they get several or are told they have Mixed Connective Tissue Disease (MCTD) - which is pretty heavy duty and not the same as Undifferentiated Connective Tissue Disease - which has a better outcome often.

    I'm guessing with your high ANA that you might be told that you have MCTD - where I suspect I probably have UCTD - but having showed with classic RA symptoms for a few years I still carry this label although the disease has wandered off and shape shifted more times than I can count. It is interesting how much we all need a name to pin our symptoms onto so we can learn to accept it. Would MCTD be enough of a name for you if the rheumy tells you this is what you have got perhaps?

    I found it psychologically very helpful when I decided to go with the diagnosis I've had from two rheumies of RA. It gives me a name to blame things on and to tell people why I'm not well - even though I wouldn't be at all surprised if the name changes when I move to a new area later this year and get a new rheumy. In a sense it doesn't matter what it's called but how it's treated - but emotionally it is much easier to have a name I know. Are you on any treatments for inflammatory disease just now or is the lack of clarity holding your rheumy back from making a decision about treatments too?

    Twitchy

  • I generally call mine Rheumatoid Disease, but the consultant calls it inflammatory arthritis with secondary osteoarthritis as I have various "funny features" as he calls them. My hands and wrists look exactly like all the pictures of RD, and when they are swollen, red and painful, the consultant talks about Rheumatoid Arthritis! So I think he is undecided about what to call it, but it is simpler for me to call it an auto-immune disease that attacks my joints and bone marrow, when talking to people

You may also like...