Can hardly write for tears.
PMRpro, if you are reading this, there is care here in the UK. I have found it at the MRI.
Went for my appointment, which you know was going to mean so much. Was met with, "you have cancelled this appoinment, you are not on our system."
Tears? Good job my fat keeps me afloat. Turned out to be the cruelist of coincidences, both things! Despite that, the receptionist was at pains to help, seeing my distress, spoke to the head nurse, and said a nurse would see me. We went into overdrive thinking vindictiveness etc but the coincidence was pointed out. Pheweeeeeee!
I cannot begin to tell you what that felt like. From my experiences of St Helens Hospital, it is my opinion that if it had happened there, I would have been turned away.
The oh so experienced Lupus Nurse Emma, listened, was clearly most sympathetic to what I had experienced at St Helens Rheumatology department, though was too professional to comment, then symbolically opened her/the MRI/Kellgren Centre arms and hugged me.
I am on their service now. Not only are they my Lupus doctors, they will be my Rheumatologists too. I have three ways to contact them for advice, reassurance, help should I need it. Emma made me an appointment for Christmas time, to keep an eye on me. I showed her last months blood test from St H which had my potassium at 5.7 which I was worried about and no one had shown interest in. (Its been floating around 4.8/5.2 for months.) she immediately wanted to know my current creatinine levels and potassium levels and after the talk she sent me for urgent bloods and urine test. I had had my bloods done at St H this morning as per four weekly,(not scrubbed off that system... yet!) so Two empty arms!!! Yes I am that old. Good old Hancock!
I was totally deflated on my exit... in a good way. Here was care I had only read about on here! I felt cared for, concerned about and totally supported. NEVER, EVER felt that before.
So I am in the care of my eager young fresh GP. I will update her next week to give time for Emmas letter to reach her. She will outline all the proposed steps which include a 10 week course at Manchester in Fibromyalgia support. When Doctor Gorodkin (Lupus Specialist I saw on referal in May) one of her many recommendations was OT and Physio referral. My, then useless GP referred me to St H hosp to a 'physiotherapist service for older people' ( cheers, thanks, made up!) where my basic muscle strength was assessed and I was given exercises to perform daily, gentle ones, ok that was useful, but ?? That circumvented both OT and PHYSIO! Emma has corrected that. She has also noted that as all the pills n potions for my Sjorgrens have not been successful, that Dr Gorodkin had said, in her four page report after my first meeting with her, that forgot the name!! something ending in ...pin as a tablet might help.
Emma ALSO said that the ongoing and worsening problem with my stomach not emptying for hours and the belaboured passage of poo (sorry TMI) was down to Sjorgrens too, which no one had suggested, and so lessened my worry that my neuropathy was escalating, to looking at trees not the woods. Simple. Remember I have been sent a gastro apt following my fibro scan on my liver (AIHep) where three gall stones were discovered "floating around". I do hope she is going to remove them, as I am sure you will agree that I do NOT want them floating around to lodge somewhere and cause even more mayhem. But I digress.
All in all I cannot praise every member of staff, and I include red tee shirted people who prowl the corridors to help anyone hesitating for one second and looking lost, for their friendliness, compassion, good humour and care. I feel that I went to another country, ref my PMRpro comment, like Italy. I will get copies of letters, results etc as a matter of course and feel like I have a large, soft comfy safety net to land in should I have the least concern. Bravo MRI. This is the NHS that people eulogise over. I have never seen it before.
It is the irony of ironies that as a Liverpool fan, I had to go to Manchester to find it.
I hope you will rejoice with me that I have found safe harbour whilst tossed in this awful boat called Lupus, at last.
With grateful, heartfelt thanks to everyone at the Man Roy Inf
⚽️
xx
Finally been to a specialist 
Little cash but a lot of Lupus awareness
Lupus aura and energy? 
