Firstly thank you so much for your wonderful lovely responses. You all gave me that bit of extra umpff to do it this morning.
It's not all good but for him... honestly I think someone has said something to him. A warning a general"be nice" talking to I don't know. Perhaps he's been reading our posts? Who knows. But he was really nice to me this morning! My telephone appointment was at 11.45am but after my email and photo evidence he decided to ring at 9.40am. so he had plenty of time to talk to me. (Ok he spent 40minutes on phone) but better than I expected. I don't think he actually read my email or looked at pictures, because he asked me what's wrong and I kept referring him back to the email and pics. But he was very nice to me. (He is egyptian) at the end of our conversation he referred to me as a camel. Apparently it's a great compliment. Camels carry great loads never complain never give in. He said he's honered to have me as a patient because I put up with so much for so long but never give in. He has doubled my azathioprine to take over some of the work of the steriods and does not want to raise my steroids again because they have made me so I'll with cushing's. He doesn't want to do that to me again. He is concerned about the protein blood and glucose in my urine. So I'm having a blood test and urine test. When he gets the nurse to ring me for appointment. He did concede (do you understand this guy's?) that looking more closely at my previous blood test that my C4 is on a downward low curve? Which concerns him?
I then very tentatively adresed the message that my gynocologist wanted me to pass on to him about my CA125 test being MY inflammation marker. I was really frightened to say it but I did it.
OH MY GOD!!!! He said he is very pleased the gyny is very very clever as there are only a handful of drs that know this information. And yes she is totally right!!!! (I nearly cryed I was so relieved) he said they will look at this now as MY marker. He was very impressed with this information. So he's going to look more closely at my new blood tests when I get them
That's the good stuff.lol he wouldn't answer the question mark over my lupus. Shut me down when pushed about 30% of lupus patients don't have positive ana. Wouldn't committ to what's causing my problems. Just kept saying sjrogens this sjrogens maybe that. Wouldn't address my painful twisted hands ,swollen joints, my severe tremor's,headaches and sickness, distended tummy, excessive weight gain or my pins and needles and numbness in my arms and legs. Wouldn't explain why I'm now on folic acid, collesteral tablets ,dehydrated, blood pressure borderline high. And my SATs are terrible oxygen as low as 80 and my heart rate is 36 bpm right up to 146bpm. He said my low heart rate is fine!? ( I always believed under 60bpm is bracacardia?) But if my heart goes above 100 ring him! I told him iv sent him about 25 pictures of my out of control SATs my heart beeing above 100. He said don't worry. Not to worry about me beeing out of breath!! Also my severe tremor! Don't worry.
So he is seeing me in clinic in 3 months time. Iv told him I'll loose my job of ten years in April. But said nothing. I told him iv had O.T in and provided equipment for me and how much it's helped. But didn't seemed fazed by my level of disability.
So that's it guys he addressed my meds my CA125 marker and blood tests and urine. But nothing else.
For me? I am not crying lol so I feel it's been a goodish outcome? With all your help I'd preped for three weeks. Been exhausting writing emails ect. Iv kept photo diaries ect. So when I went into the conversation I thought.." nikki you have done as much as you can. If this doesn't work then you know you have given it your all". At least he listened. He said some lovely things to me. A bit too over the top for him. (Which made me think he's been spoken too) lol .
But you all know much much more than me guys. What's your opinion on this mornings appointment?
Be honest say what you think. This may be as good as it gets? I don't know. Once again guys thank you. I wouldn't of gotten this far without you.