Hi All. Well, here I am, back from the MRI in Manchster. Bit daunting at first, small entrance, millions of people but Rhuematology and the Lupus centre were a walk away from the masses.
We entered a quiet side clinic which was all calm and serene. The first thing I noticed as we approached the reception window, was a white card stating
PROFESSOR BRUCE IS NOT IN CLINIC TODAY 😂😂😂
Well, I thought, you couldnt write it. Trust me! Perhaps he had heard about my single minded approach and had lit out for the hills!
It mattered not as, although an hour late, I was approached by a charming woman doctor who introducd herself and apologised for Prof Bruces absence.
After one hours chat, yes one hour, I felt I had been listened to and then the consultant discussed what her findings were.
Somewhat taken aback her opinion was, basically, my little wolf was lying in his basket in the corner, snoring gently. My Lupus was not flaring and remains stable. Ah. So much for that theory that all my ills stem from Lupus.
She then went on to diagnose Fibromyalgia as the source of the increasing pain in my joints and muscles which have been gathering pace over the last three weeks. The pain in my typing finger is bearable today. I could not have written this Thursday or yesterday. The major sleeping problems I am having, she attributed to Fibro too.
As to the dryness of my eyes etc etc I said I was waiting for a script from Reluctant GP for alternate eye drops and night ointment as the first ones offered where ineffective shall we say. My dry mouth, erosion of enamal on most of my teeth she nodded at but could only recommend moisturiser for my itchy dry skin. She observed my dry tongue, dry lips despite drinking copious amounts in front of her. She examined my joints and walking, oh and here is a new one on me, I have joined the cohorts of Lupus patients with flat feet she has seen It is a common occurance she said. Arch supports for me from now on. Cause of foot pain anyone?
As I was not from her 'jurisdiction' she could not send me to occupational or physio, due to the cost and distance of travel. I have the impression that she will be suggesting these measures plus a raft of meds which she thought might help with various problems.
I was sent to two of the jolliest phlebotomists you could ever hope to meet, complete with a yellow happy face ball to squeeze. One lady was familiar with our charity. I had about ten phials of blood taken.
Over all a nice experience. I feel that RGP will find it amusing that my Lupus is quiessent and my insistance on seeing a Lupus specialist foolish. Nil point to me despite my insistance and belief Lupus was the cause. Still. I know better now but I am not giving up. I await her report and her blood analysis with great interest and wonder what else she can show me. I have no idea how long that report will take. When I asked how I would know RGP had the report she said I would have a copy. YIPPEEE. So if RGP pulls his "I never see reports from hospitals" I can produce mine with a flourish and confound him and see what he will give me from the kind doctors recommendations.
Disappointed? Not with the standard of care which was first class, but I really thought my grasp on the slippy tablet of soap called diagnoses was sure. Guess what? Nope. Same old same old with our condition, though not Lupus, nice wolf. So is there someone else who can help? Are all my problems auto immune like a bunch of dandylions, each separate and stands alone though caused by auto immune dysfunction?
Lupus, Menieres Disease, Auto immune Hepatitis Fibromyalgia. Does all this still come under the Rheumy? If not who?
I have had a conversation about the possibility of an Immunologist and a Heptologist appearing at my local hospital. Now the first may be the ideal person. Does anyone find themselves in the care of such a doc? How goes it.
I am not sorry I made a fuss and demanded a referral to a Lupus specialist. I have seen one and await her full opinion. I do worry if the result will mean a gleam of triumph in RGP eye.
As I still have other symptoms not investigated I wonder if my next request for referral will be met with a flat no. But he knows nowt so why not? It is my body after all.
I hate feeling beholden to these pompous people who have smirked and looked blank in the recnt past.
Oh well. Deep breath. Await results then address them and my next round of enquiries, the barium swallow being in two weeks for my oesophagus motility issues. I think that may be an auto immune issue too, but have not found material on it yet. No one has yet included complete lack of appetite in any proposed diagnosis which I find singular and worrying after four months.
Oh well me 'earties. Report as promised. I hope it proves it can be done with perseverance and that a good experience can await. Gird up ye loins and stand firm guys. Its your health after all
Love and hugs all round.
Your continued support and advice as always deeply appreciated
⚽️
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