Sorry this is going to be a long post but I just need to vent!
I was referred to ENT by my GP due to swollen eyes/face every day ENT ran tests and started me on a course of steroid nasal sprays. These helped but as soon as I stopped taking them the symptoms returned. On my next visit to ENT I saw a different consultant who was lovely and asked me loads of questions about my general health not just in relation to ENT. He believed after hearing my medical history that my symptoms may have an auto-immune component and ran some blood tests. These blood tests showed there was something auto-immune going on and I was referred to rheumatology. My first appointment was back in April and was with the rheumatology nurse, she took my medical history and some of the things I told her, sun sensitivity, hair loss, raynauds etc etc made her call in the rheumatologist who ordered a raft of blood tests. He asked me a few questions and told me it was probably nothing and he had no idea what the eye/facial swelling was and that it would probably go away by itself (at this point I had had it 12 months and it did not appear to be going anywhere!!) The rheumy advised if the tests showed anything they would call me back to clinic.
6 weeks later I was copied into a letter sent to my GP advising due to the blood test results and my medical history that the rheumy was making a probable diagnosis of SLE and sjogrens syndrome and they were recalling me to clinic. Finally I thought I was getting somewhere. I eventually received an appointment but had to wait 6 months. I was disappointed that I would have to wait that long but I understand that NHS is stretched and I decided to use the 6 months to educate myself about the probable diagnosis.
Well I finally saw the rheumy on Thursday and it was a waste of time, I had a grand total of 4 minutes with him where he told me my SLE was only mild. My symptoms have gotten worse over the last 6 months and the nice summer we had killed me and I spent most of the sunny days lay on my bed in pain. I tried telling him how things had changed but he was disinterested to say the least. I tried to tell him that my sun sensitivity was the worst it’s ever been this summer and all he asked was did I get a rash on my face. I tried explaining that I get an all over rash that looks like prickly heat but doesn’t itch and I have also started getting a more localised rash on my ankles where the spots are larger and itch like mad. His response was “oh right, but do you get a rash on your face.” I then told him about the muscle pain that I’ve been suffering with and how it can be so bad it wakes me up in the night and I have to take pain relief to be able to get back to sleep. His response was “do you mean cramp?” No I mean muscle pain. “Muscle pain is nothing to do with lupus, take some magnesium that might help.” I was shocked everything I’ve read about lupus advises patients can suffer joint and muscle pain and here is the doctor telling me that it was nothing to do with lupus. That comment threw me off my stride completely. I never got to tell him anything else as he told me he’s going to monitor me for the next 6 months and then put me on hydroxy. By monitor he means he’s not going to see me until my next appointment. He ushered me out of the room and gave me a leaflet about hydroxy so I could have some information about it before my next appointment and he told me if I feel that my symptoms are getting worse I can phone the helpline and get it started sooner. He never gave me a helpline number I thought maybe it was in the leaflet he gave me unfortunately I didn’t check as the nurse called me in for bloods and I didn’t get to look at the leaflet until I got home.
I feel really let down by the NHS, I know my condition has changed in the last 6 months and I thought I would finally get some help. How wrong was I? The rheumy did not at any point actually tell me what SLE or sjogrens is and did not offer any practical advice. I have emailed the hospital’s query team to see if they can give me the helpline number.
If you read this overly long post thank you, I'm so glad I found this site as reading other people's post and questions has really helped me over the last few months.