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I came home yesterday evening.
I sat round all day waiting to see the doctor and around 5 pm the registrar turned up! I was not pleased and promptly burst into tears. Having waited all day I was getting very frustrated.
I told her that I was expecting the consultant. Anyway, to cut a long and boring story short I gave her a list of my questions and issues.
I must say that she was much better than the previous time. I explained that I was part-medical and I needed and expected more explanations than the average patient.
She went through everything with me and in a nutshell here it is
I have some form of non-reactive arthritis, it can be difficult to classify the different types. Mostly diagnosed on symptoms, age, joints affected, triggers, how it responds to treatment etc.
Mine is probably related to the bug I had back at the end of April. I may have got it because my immune system was low or I may have got it anyway.
I need to take this sulphasalazine, it may take 6 weeks to see if it works. It will reduce the inflammatory markers in the blood and these should fall to more or less the normal level. If they don't then I may need a different treatment.
The levels are still very high and a bit variable - normal for levels to vary, need to see a trend over the next month or so.
Normal for joint pain to be very variable, from day to day etc.
Probably a few weeks before I should go back to work.
Reduce steroids and take regular pain killers
See the consultant in 2 weeks. She phoned the consultant to confirm all this.
I felt better after she really did take time and care and confirm the variability of symptoms and how the disease is monitored. What she couldn't answer is whether this will clear up in a number of months and completely disappear or if I will suffer from intermittent flare ups.............she thinks this is reasonably likely especially given everything else going on.
So a friend kindly picked me up and here I am at 4.30 am wide awake. I will be glad to get off the steroids and back to sleep. It will take about 2 weeks to get off the steroids.
I will email the haematology team and see when they want to see me and I will make an appointment to see the rheumatologist.
I had hoped for a quick few pills and a quick fix. I need to begin to get my head round the fact that I need to give it a few months and hope beyond hope that it goes away and stays away.
It was funny to come home, the house was so empty. Mike was on his way home from Germany and Amelia was out.
Tomorrow is her last day on the baby unit and she is going on the delivery suite again. She was in the miscarriage clinic yesterday having her eyes opened to the real world. One woman had had 4 miscarriages, didn't want her husband to know, no hospital letters to home etc. Very interesting cases for her to know what life is really like.
Susan
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