Getting diagnosis: Can anyone help I have been... - LUPUS UK

LUPUS UK

27,655 members23,785 posts

Getting diagnosis

Burnley1234
Burnley1234

Can anyone help I have been going round in circles for 10years I’m at the end of my patience I have chronic bile malabsorption that’s meant I’m on powdered diet cos of chronic diarreahconfirmed secant test no retention back through blood I’ve had repeated plueresy double pneumonia and now ruptured ear drum glue ear osteoarthritis in feet 100percent loss of cartilidge I’m having really bad seizures that are frightening my bloods been elevated for ten years I have guttate psoriasis lumps that hurt like hell now I’m being told it’s probably a systemic disorder I was told by rheumatologist that 5years ago I was tested and was double beg and he told me the other problems ie guttate psoriasis double pneumonia was irrelevant now I’m being sent back to the same specialist to be reassessed I have no confidence in this consultant at all also lastly was born which damage in spine that was diagnosed as occult’s spina biffida but now I’m told that was wrong diagnosis and it’s wear and tear arthritis in spine only problem which this is the damage was there at birth and you cannot be born which osteoarthritis when I question this I’m totally ignored this is my medications pregabalin 150mg tramadol50mg heart spray venaflaxin150mg conotrane bile sequestrants and powdered shakes for food and if anyone can advise cos I’ve had enough I need the right medication soon this is killing me an I’m now malnutritioned so back on powdered diet

2 Replies

Hi Burnley,

I've just written a similar post and Paul in admin has kindly given me this link for PALS nhs.uk/Service-Search/Patie...

I hope this helps you! I'm very much on your level of thought accept I keep getting the results that there is nothing wrong. But you know your body and you know when you can walk away and say 'It's not so terrible and I can live with it' or 'something is wrong with my body, please help me'

I have heard many people say how hard it is to diagnose an autoimmune disease. But your at 10 yrs, I'm just a few more yrs than that. So I would hope in 10 yrs we could have someone tell us what's wrong or at the least GIVE US HOPE that THERE ARE ANSWERS and THEY will TRY to FIND THEM. I think those words would make me feel better. At this point, it's in my head. I was actually happy that just lately I've had visual issues.

I wish you the best. Try and contact PALS if you haven't already of course.

❤🧚‍♀️

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Burnley1234,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

As Ladyuponthelake has already mentioned, I would suggest getting in touch with PALS if you haven’t done so already to see what sort of help/advice they can provide you with.

If you would like to find out what tests and criteria are needed in order to make a diagnosis of lupus as well as what symptoms are commonly associated with lupus, click here lupusuk.org.uk/getting-diag...

Please let us know how you get on, wishing you all the best.

You may also like...