So, fed up with the ignorance, downright insults, finally changed surgery.
Unctuous fellow scandalised that my meds had not been reviewed, but there is a tale there, request/plea for an alternative pill to Pilocarpine for worsening Sjogrens brings theatrical disbelief that no chemist around will dispense it, I am a dental surgeon I know this pill, it is 30yrs old... at which point, had I had any tears I would have wept, but pressing on for B12 injections he turned into a Dalek. And spouted we have to adhere to NICE and blanked me, gave me another prescription for a drug I cant get and asked if I had topical treatment for my swollen sore eyes, for the terribly flaring Sjogrens which is systemic, for which I need the med.
So much for my first apt with first GP in practice. Even the prescription was written on someone elses script pad!
That was yesterday, today, Friday I have apt with gastro who ordered CT in Sept, scan looking for nonexisting bleeding to find source of anaemia. This was after a discussion on whether my acute, non treated illness in February was indeed pancreatitis, or whether I had been tested for Coeliacs, I have five other autoimmune diseases, and as I understood it check me out for any other thing making me so weak and ill.
I received a letter in October of four lines telling me that my organs wete fine. Needless to say... miffed. After cancelling my apt with top cons for 7th I went into meltdown saying I needed answers. I could have apt today.
I arrive to find I am downgraded to a nurse. I fall in a heap. Problem? I want answers. I can do that. Well did the CT scan show the villi? Pardon. Pause. For coeliacs, did... The what?
I want to see a doc. Not a happy bunny. Respect to nurse but she not have answers. Eventually to see she who ordered CT scan. Unexpected hurray.
All explained again. BUT THE CT SCAN WAS ONLY LOOKING FOR BLEEDING, so proof of coeliacs? Proof of malabsorbtion of B12? All organs fine. Well nice though that is WHAT ABOUT ALL THE QUESTIONS?
Told her I went gf the day of the CT scan as I could no longer stand pain and bloating. Oh good. Fab ses I much better, but not right. And so we go on until the summary.
I stopped PPI in Sept prep for IF blood test and the Vit B12 mythylcobalomin supplement I had been on, for the other recommended blood tests for Vit B 12. Not good enough. I have to gluten myself until apt comes through for gut biopsy via endoscopy. Prob about 6 weeks. Is this long enough though?
I have had blood taken for
TAA GGT GPC IFBA VIT D FERRITIN U & E AND LFT CALC AND ALBUMIN AND THYROID, WHICH i could have showed her as I paid for a panel privately and seems all cleAr.
I appreciate her time. Has she stepped in on B12/PA tests to save any more moronic encounters with GPs? Oh, yes, 246 is within our hospital norm for B 12 yes but not ACTIVE B12...
Can anyone find a glimmer of hope for me? I have apt in system for yet another endoscopy with biopsy this time... the definitive test she say??
Yes, I miss only about four of the symptoms on the given symptom list incl neuropathy of feet. There is something wrong with the vision of my right eye. Now I have to poison myself over Christmas. Oh joy.
Please unscramble and give me some tiny grain of hope, or I shall do what they seem to be telling me, go away and die!