One diagnosis to another

[Mealfredo78]

I have been told either have rheumatoid to lupus and now might be fibromyalgia.... I have STOPPED all meds til I go somewhere else... don't these medical doctors know anything!!!😡

[Jess_doyle]

I've been the same they call it mixed connective tissue disorder, I'm between different things I have parts of lupus and parts of arthritis and other things, my old consultant called it rupus, they just don't like calling it one thing or the other. But research the mixed connective and see if it adds up? Would be my advice hope it helps!

Before I was diagnosed my doctor said I was anorexic, I had some other form of arthritis the list went on till they finaly done my bloods and I seen an amazing consultant but I had to go private! Best thing ever did £200 seen him once then straight into the NHS skipped all the queues this stage I was size 6 was fading away couldn't move.

[AnnNY]

I was finally diagnosed as having UCTD. If you flare up and certain blood tests go positive that actually might help you diagnosis. It is frustrating to have you diagnoses wander around. There was no UCTD when I first got sick, so sometimes science has to catch up to you. Other time shows more clearly what is going on with you.

[Paul_Howard Partner LUPUS UK]

Hi Mealfredo78 ,

I'm sorry to hear that you are having difficulty getting a confirmed diagnosis and understand how frustrating and stressful that can be. Unfortunately autoimmune and connective tissue diseases can be very difficult to diagnose because they can present with similar symptoms, some of the same blood test results and can often overlap with one another. If you do not display the clear symptoms and clinical markers for one condition, then it can make it more difficult to pin down an exact diagnosis. As the other members have said here, it is possible that you could have a mixed connective tissue disease (MCTD) or undifferentiated connective tissue disease (UCTD). You can read more about MTCD in our factsheet here - lupusuk.org.uk/wp-content/u...

I would urge you not to stop your medication without informing your doctor and doing it under their supervision. Suddenly stopping medications can lead to serious side effects, especially with steroids. It could also result in a flare of your symptoms.

If you are unsatisfied with your current diagnosis and treatment plan, I recommend that you ask your GP to refer you to a different consultant for a second opinion. It may be best to ask for a referral to somebody with a specialist interest in lupus. If you let me know whereabouts in the country you are, I can provide you with information about any lupus specialists near to you.

[Mealfredo78 in reply to Paul_Howard]

Thank u I'm in NJ

[Paul_Howard Partner LUPUS UK in reply to Mealfredo78]

Hi Mealfredo78 ,

Sorry, I didn't realise that you were not in the UK. I do not have any information about lupus specialists outside of our country I'm afraid. Could you try contacting the Lupus Foundation of America to see if they can advise you? lupus.org

[AnnNY]

Hospital for Special Surgery is on the East Side of Manhattan and they have a strong rheumatology center. Recently, a New Jersey center has opened in Paramus. They diagnosed me (NYC) with UCTD, which makes sense to me. If what one rheumy isn't working for you, you may just need to go elsewhere. Here's the web page for Paramus. Bring the blood tests that showed why you were diagnosed with autoimmune disease in the first place.:

hss.edu/hss-paramus.asp

[jacclaire]

It can take years for some to get a final diagnosis as they are all similar and if inwasnt in a flare my body would say I did not have lupus then I did it was confusing. Sometimes that's why they take ages it's not that they don't know wat they r doing everything takes so long. Eh a propper blood test for lupus takes over 3 months