Seeking diagnose

[catblue1865]

Hi I'm on the waiting list at a specialist centre for last attempt at an overall diagnoses.

I've had at least 4 conditions separately diagnosed and have typed this down but in past a specialist has said these have already been diagnosed so is it best just to describe the symptoms?

[stiff19]

wow well I am in the same position and its seemingly becoming a bigger problem . can I ask what specialist centre and where and how you got the referral to waiting list. I was apparently a problem to diagnose and was referred to Bristol ,waited two years and then told not accepted but for why no one has answers. I am undiagnosed and have been told more than one condition and I personally believe more than on condition as things not fitting but then I have had a lack of care and tests so its understandable but now my daughter is going through the same and just ridiculous. history is not relevant to most you see so its no wonder things are not diagnosed. personally life is tough living like this and there is a huge need to know for self care and preservation but if you're In the uk as I am its near on impossible to find the help. you read works up for diagnosis ,this tested that tested etc to aid diagnosis all we get in my position is blood tests and scans and told normal despite symptoms its hell on earth and soul destroying. you have my total understanding

[MusicalFurbaby]

Hi catblue, sorry to hear you are having such trouble getting an accurate diagnosis. Autoimmune diseases are terribly difficult to diagnose; a lupus diagnosis takes an average of 5 years. Mine took 8 years though, due to initial misdiagnoses. You are not alone!

What kind of specialist are you seeing at the centre? I am assuming it is a rheumatologist or an immunologist? If it were me, I would start with a comprehensive listing of all my symptoms, and then mention previous diagnoses along with reasons why investigation is ongoing eg. I’ve developed new symptoms since then, or the diagnosis doesn’t fit with my symptoms, or my symptoms aren’t explained by a single diagnosis and there may be multiple coexisting conditions going on here. Comorbidity is relatively common, and people with AI stuff tend to have more than one!

Let us know how you get on, and in the meantime, remember that you’re not alone. 🌻🌈