Well, had my appt today - not with the prof but one of his minions and not sure why I bothered to be honest. He took all my medical history and was in there 90 mins in total. Asked when these latest symptoms had started and explained everything about the Crohn's and Humira and then pain, fatigue, hair loss etc I had since coming off the pred in May. I don't have any swelling over my joints but never have done even though I have Crohn's arthritis. Tested me for fibromyalgia and was clear for that, only areas that are tender are on my shoulders from previous neck injury and back of pelvis so he wants MRI to check for inflammation there as I have sciatic pain.
This is the bit that got me.... I won't see him again for results of MRI or blood test until January (MRI to be arranged and will prob be 8 weeks or so) but blood tests should be back after a month but cannot phone up for them - you have to be seen by someone. He questioned whether I had really had antiphospholipid syndrome or.....had I just imagined it. I should have taken along my babies post mortem paperwork that has it on there as the main contributing factor to the stillbirth. I asked him if blood tests come back negative for the ANA and he said then def not Lupus or any sort of CTD. He said you cannot have Lupus or CTD without a positive blood test.
Anyway when he said it would be 3 months til I find anything out I broke down and cried my eyes out, not like me as really strong person who doesn't get upset like that in front of people. I said so what the hell do I do for next 3 months, I'm in agony, exhausted and can't do my job properly....he came close to shrugging.
So I dashed back home and rushed up my doctors, needed to get some other pain relief sorted as only signed off this week. Luckily I got there just at end of morning surgery and same doc I saw last Friday saw me. Told her what had happened and got really upset again. I don't really care what this is whether it is Lupus, nerve damage or whatever just need to know so can deal with it, get medication right and move on. So she has changed all my pain meds around and have now started oxycodone and gabapentin along with the amitriptalyne at night as the nerve blockers seem to work well and she signed me off for 2 weeks as it will take week or so for body to get used to them. Oh and she said I look like hell! Always nice when a gp tells you that. Not.
So no answers and not sure I will get any as unfortunately my body doesn't respond to how they say it should in the medical books and had this before where they say it def isn't something as blood test normal but then turns out it is. Sorry to rant on but his attitude upset me, basically tough - get on with it as he not interested in how I cope or not cope day to day and blood tests are all regardless of anything else.