We live in the UK, and my wife has recent been diagnosed with Lupus at our local hospital.
I must admit my wife and I are find the whole experience very confusing, and i am not totally sure the hospital are giving us the right advise so I am hoping people in this forum might be able to help us.
We spent about 18 months attending appointments as Erika was suffering with; aching joints, feeling run down and cramps.
The hospital consultant for 18 months explained that the medication for the symptoms were very terminal and he didn't want to put her on any medication until he was sure what it was. At this point we thought it was arthritis.
In January 2017, Erika did a water sample at the hospital. A few days later the consultant rang Erika and told her due to the results he needed her to start taking medication for Lupus as she had traces of Lupas in the sample. She was not allowed to have an appointment with the consultant until August 2017.
We attended the appointment asked many questions but it was played off like it was nothing. Almost like as you only have the start of it, you'll be OK.
Since the appointment she has done 3 more samples because; 1) got lost in the hospital, 2) got left to long and they need a fresh sample, 3) hopefully they will do something with this one.
My main concern is. If they can't get these samples right, could she have been diagnosed incorrectly? Could that sample have been let to long?
Anyway, I would like to try to find some alternative advice as the doctor at the hospital are concerning me now. Is there a nation expert we could speak to? A group we could attend?
Any help and advice would be greatly appreciated.