Getting diagnosis and treatment

[Burnley1234]

Groundhog Day now getting sent back to reumatologist who would not diagnose 6yrs ago,I had the following,elevated white blood cells for ten years,double pneumonia repeated plueresy,full torso discoid guttate rash had light treatment,ear drum ruptured osteoporosis arthritis both feet 100% loss of cartilidge,osteoarthritis in spine,severe seizures like heart attacks,major memory loss,lost full use of hands because of excruciating pain,dry painfull eyes,I am allergic to all Collins as in penacillin etc I cannot have anti inflammatory I have had polyps removed twice can only pass liquid for 6years I’m malnutritioned now and on powdered diet ensures cannot have multivitamins I’m on renavit also bile malabsorption whith no retention I’ve had Sev at test which proved this and the rheumatologist said this was all irrelevant now I find out I’m being sent back to him bear in mind the same consultant told me last time quote just try some vitamins I begged him for help I was dying he fobbed me off two days later I ended up in acute care ventilated for five days I’m at my wits end suicidal angry in pain and my life as I knew it gone,now being told I have to go back to this I’m struggling to keep everything in check pls any one whith advice cos I’m giving up xx thank you michael

[whisperit]

Hello burnley1234

It sounds like you have had a truly terrible time over these past few years and you really need some extra help right now.

Generally speaking, I would suggest making a list of what you want from this rheumy referral. For example, what symptoms/problems do you most need explaining? What problems do you need most help with managing? If the rheumy is saying that your problems are not caused by whatever you think they might be caused by, ask him/her what *does* explain them? What is his plan for dealing with them?

The Lupus UK leaflet on symptoms and diagnosis might help - I find it useful as a way of remembering what the most important blood tests and diagnostic signs are. Likewise, the leaflet on treatments is useful for helping understand what medications I'm on, why, and what I might expect to happen next. They are online here lupusuk.org.uk/publications/ Whatever the consultation, try to make sure that by the end of the appointment, you are happy with what the plan is for the next few months and what to do if things go wrong. Hope things improve for you, and fast x