1. Community
  2. Bones, joints and muscles
  3. Lupus

Lupus or something else ? How to get a diagnosis with auto immune ?

Posted , 3 users are following.

clair17
clair17

I have been seeing a neurologist, gastroenterologist and Rhumotologist for three years now and was referred to the lupus centre as it seemed to be heading to a diagnosis. Bloods came back inconclusive so I'm back to square one. How long did it take to get a diagnosis with auto immune conditions ? I currently have confirmed diagnosis of ankylosing spondylitis, sjorgans syndrome, hypothyroidism, pernicious anemia and vit d deficieny and every day is a struggle.

0 likes, 2 replies

2 Replies

  • susan33651
    susan33651 clair17

    Posted

    Mine was fairly quick, from first seeing my GP to seeing a Rheumatologist and being diagnosed it was about 8 months. My brother on the other

    hand took 8 years!!

    It does depend on how proactive your GP is and how experienced the Rheumatologist is, not to mention how convincing the various blood results are in addition to any physical findings the specialist discovers

    upon examination. There are members on this forum who have spent years trying to get a diagnosis.

    Luck plays a big part too, it seems!

    Best wishes.

  • jean20935
    jean20935 clair17

    Posted

    HI Claire -  I have no quick fix for you, unforunately, as my diagnosis took a long time. Your situation mirrors mine in that I have Mixed Connective Tissue - Lupus, Pernicious Anemia, Under Active Thyroid, Fibromyalgia. Unfortunately the conditions you have overlap one another and are complex. I have liaised with Susan who already contacted you regarding the problems with getting diagnosis and it is not an easy road. I can only tell you from my perspective.  It took me 7 years to get a diagnosis of Lupus - but that came quickly once I was referred to a rheumatologist. Keep notes of how you feel to build up a picture of your symptoms. The important thing is to manage each condition - there is not one pill fixes all - unfortunately.  Keep your chin up!!
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.