Sorry to just jump in but I am shaken up as found out I may have lupus in the worst way. Sorry this is long.
Earlier this year I had a blood test which showed raised liver function, this led to more blood tests and the GP referred me to Rheumatology in June. I got an appointment for mid-August at which I was told I have Sjogren's disease, though the doctor didn't want to commit to that diaganosis until I had other tests. I provided a urine sample and also had a lot of bloods done.
As the doctor didn't want to give me any leaflets or much info about Sjogren's I researched it myself and when I found it's ususally present with other autoimmune diseases I figured straight away given how I felt I either had Lupus or Rheumatoid Arthritis. I have been worried sick since, and also suffered a brevement at the start of the year which has led to other problems like the risk of losing my house. I have been crazy stressed but it has only got worse.
Since my August appointment my breathlessness has increased, I've noticed how much hair breaks off when I brush it and recently I've had heartburn daily. I got another appointment for Rheumatology which was to be on 12th October and a few days later I got another appointment letter saying it was cancelled and would be 7th December. This second letter only had the date and time of the appointment, the department line was blank. Obviously I didn't want to wait that long for a diagnosis so I called an advice line at the hospital for the rheumatology department- this was just an answering machine service so I explained that I wanted to know my diagnosis. Today after still not hearing back I found another number to call which was listed as rheumatology but was actually referrals and bookings. They put me through to rheumatology at a different hospital in the city. I explained about the appointment issues and waiting that long for a diagnosis. The woman was a bitch about it all and when she looked on the system she said the October appointment hadn't been cancelled and that the December appointment was for a "pre-lupus clinic". I said "oh so that means I have lupus then?!" but she denied it and just said it was the name of the clinic.
I realise I'm rambling a bit but I'm in shock I think. I know someone who passed away from complications with lupus and my breathlessness has been worse today so it's got me in a bit of a panic to say the least. I don't know where to turn or what to do because the hospital are completely useless! I really want to make a complaint also but I don't know who it was who said the appointment was with the lupus clinic. I'm also wondering if that's why it was missing from the second appointment letter since I haven't officially been told yet. I'm besides myself with this. Sorry for the rant.