Well today finally arrived and I met with the Rheumatologist Consultant at my local hospital.
He seems to think the original GP's diagnosis of PMR/GCA is correct and doesn't agree with Dr Hughes theory that it may be RA or Lupus type autoimmune.
I have had an X-ray on my chest and hands, he sent me for blood tests (21 different tests!) and also has referred me to an ophthalmologist and booked me in for a CT scan with contrast as he wants to rule out anything 'sinister'. He has also told me to up my Pred by 5mg (after rapidly reducing to 10mg) as my shoulders and lower back/hips are really stiff and painful and to go straight to A&E if I have any more eye episodes or bad headaches/jaw pain etc. Oh and to resume taking the aspirin everyday which I had stopped when I started reducing and also heard it's pointless?
So I'm feeling a little bit encouraged by all the tests that someone is taking it seriously but also a bit confused with all the conflicting diagnoses. Particularly as my appointment with Dr Hughes was contradictory to everything I have learned here so far.
Was also mortified to admit my weight has ballooned and I now weigh more than my husband who is a strapping 6ft 4". Pathetically, this was the bit that made me teary, probably because he was sat next to me. I guess if you saw pictures of me from 6 months ago you may understand my vanity but I am just so uncomfortable as well and don't recognise the person in the mirror. Now I am on a lower dose of Pred and don't seem to have the all consuming ravenous appetite and insatiable sugar cravings I am going to concentrate on sorting my diet and cut out the sugar and carbs.
So not sure what to make of it all but a couple of amusing things to finish with, the Drs name is Dr Seymour and every time someone mentioned him I kept thinking of Seymour Butz and got the giggles, (apparently from The Simpsons my 14 year old has told me) but kept my juvenile mind amused. The other one was that I had to don the lovely backless gown for the X-ray...only due to my stiff shoulders and useless hands I couldn't do it up so had to get assistance from the nurse...avec spotty pred back, bum and back boobs...what's wrong with that? Well nothing until you're all finished and you have to take it off again! I forgot to ask her to undo it and had to walk out into the full waiting room to ask OH for help 😂 Seymour Butz was very apt!!
Any opinions, advice, general chit chat gratefully appreciated 💋
Tanya (AKA Trixiechamp) x