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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Footygirl
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Sorry you didn't get to see the person you wanted to see. Glad you were listened to, and hope you get more help when your blood/test results are in. Good luck with the barium swallow.
I'm not a great believer in Fibro or ME as primary diagnoses, but I think there must be something in the notion of chronic pain if so many of us experience it - secondary to diagnoses of diseases such as Lupus, RA and other painful conditions. I can see how the brain might start misreading and overreacting to the pain signals being transmitted to it repeatedly.
I think you obviously did the right thing in getting to see a Lupus specialist. I did same thing with the support of my old GP. The chap I saw was actually a Vasculitis professor and he said that he didn't feel I had lupus - more just a very broard connective tissue form of RA. I found him credible but have since pondered because another rheumy undermined things he said to me. I don't really care what name my beasty has but I do mind when it's suggested that I'm exaggerating or over thinking my symptoms. I'm very glad for you that this woman didn't try to belittle your problems - which are many. I would take no nonsense from your RGP! X
Your post makes interesting reading and much of it resonates with my experience. After many years of fairly predictable disease pattern, mine suddenly went awry in 2012 with lots of new symptoms. I was swiftly moved onto MTX then Myco and, despite my persistent pushing, my Rheumy remained resolute that everything was due to the Lupus. MG was strongly suggested by my Neuro, Respiratory Consultant and Opthalmologist but my Rheumy was having none of it. I was referred to a Professor in Birmingham and went through a similar process to yours - the list of Differential Diagnoses included MG, Myotonia, MCTD and various muscle weakening/wasting disorders. The result - a big fat zero for everything. Everything is blamed, probably correctly I now admit, on the Lupus. Even my very troublesome MG like symptoms are recognised as a feature of Lupus.
After 3 years of hiking up and down the M5 to Birmingham, I have been discharged back to my local hospital and I now have total respect for the lack of boundaries that Lupus enjoys. Just like Twitchy, I always feel that Fibro/ME are symptoms of other chronic conditions.
I don't know if any of this is any help - Lupus is not to be under-estimated!
Thanks clareb67. It never ceases to amaze me the layers and levels of things that Lupus can mimic. When I said to the consultant I had Angina in 2005 which was thoroughly investigated in hospital, but nowt found and that I was hospitalised with Pluerisy, but nowt found she held up her finger and said, you had Angina-like and Pluerisy-like symptoms. Hm. Ok I said. But hearing you and twitchy, if they were mimicing, doesn't that make it more likely to be Lupus? CAN Lupus appear dormant and yet be sniggering behind our backs, throwing out concerning symptoms??
I dont know anything other than this is one complicated mess. If we can get confused and puzzled, no wonder the less than clued up docs are. Phew!
Do I have the strength to ask RGP for thyroid tests and adrenal fatigue tests? Ive looked at private tests but they cunningly split them up, especially the ADH etc ones where one is not enough therefore KETCHING again.
Hm. One crazy mixed up broad here guys. Bothered because facing dental surgery and doing that if adrenals out, can be dangerous. Oh boy. More fighting, more banging my head on closed doors. Breathe.
One step at a time. 1 See consultants results, dont even know what ten lots of bloods for!
2 go from there.
Ok.
Better try to defeat this sleep depriving thing thats going on too and get some non restorative shut eye.
It was a pity you didn't see Prof Bruce but glad the doctor you did see was very nice and thorough taking so many bloods. Fingers crossed for the results. It's interesting you have other auto- immune conditions which make you such a candidate for Lupus!. Auto- immune hepatitis is dealt with by a gastroenterologist which you may see after your barium swallow. Good luck for that. Looking forward to your next update. X
For your itchy dry skin can I recommend please can I recommend cold pressed organic coconut oil.
For the dry mouth there are pastilles you can get from GP, and might the dry eyes and mouth problem be Sjögren's? I use melopthal for eyes as recommended by consultant. It's preservative free and generally with some night eye creams do the trick.
I'm so pleased to hear that you had such a positive appointment. Good to hear that although the professor you were meant to see wasn't there his clinic was covered by such a lovely doctor.
Not sure what I feel about fibromyalgia. Although I believe something exists, I also feel it can be a cop out diagnosis. If you have symptoms but little or no help from blood results then the answer is fibromyalgia.
For dry skin ask you doctor to prescribe Aveeno. My GP prescribed me this and it is truly amazing. It can be bought off the shelf so, if you have to pay for your prescriptions, (I live in Scotland where prescriptions are free), then it may be cheaper to buy it.
It really sounds like seeing a lupus specialist was worth the trip. Something May have requested if I could manage the trip. Living in Scotland there are no specialist centres nearby. My rheumatologist is however lovely and does believe in seronegativity. He believes I do have lupus or Behcet's but, at the moment, just won't commit to a diagnosis.
On balance, hmmm...I guess there are enough insights & benefits from this appt to make it worth all the effort: 1 big step in the right direction
But there are also the usual sort of perplexing comments that mean we have to stay focused in order to keep moving forward towards convincing diagnosis.... & on & on: life with lupus, right 😉🙃
You've got so many wonderful replies there is little for me to usefully add except maybe these points:
If your lupus isn't flaring but remains stable, at your age, & having been diagnosed with lupus years ago, & having not received regular monitoring + treatment plan adjustments from a dedicated lupus clinic since that diagnoses, it is easy to imagine that you actually are constantly managing the typical cumulative multisystem debilitation that SLE causes. So saying your lupus is snoring gently is likely to be underestimating the state of play in your body. Lupus in children & in older patients can be extremely debilitating even when it isn't actively flaring (my case is a good example of both). what's more, Immunosenscence comes into play as we age, and my understanding is that this can mean older patients with relatively stable lupus are actually quite poorly. So, I'd expect a competent consultant to see you again once your blood results are in to discuss how to tweak your meds in an effort to see whether you can reduce your joint & muscle pain by trial & error...the fibro theory can then be put to test & reconsidered (as I understand it, if lupus meds like pred etc do damp down your joint & muscle pain you don't have fibro). sorry footy: i forget what lupus meds you're on at the mo
Your many multisystem conditions should be regularly monitored & treatment plans tweaked ongoing by clinics specialising in those body systems. I hope you are regularly seen by ENT re Menieres, eye clinic re dry eyes, periodontist re dry mouth, your liver specialist, endocrinology etc etc. If the results from the copious blood samples you've just given indicate chronic deficiencies in the immunologic tests (eg immunoglobulins, complements etc) AND if you have a history of complex persistent infections, my understanding is that you'd have a good case for referral to immunology (you know how much I'm benefiting from my referral by rheumatology 18 months ago to immunology clinic)
Re your GI problems: I share these problems (including constant trouble swallowing & loss of appetite) and there is no question they are exacerbated by my version of overlapping immune dysfunction & connective tissue disorder (SLE + SS + PID + EDS etc) as well as by all the meds i take daily + just the strain of living with & managing all this health stuff. Am so glad you're getting investigated properly...and I still believe you should attend NHS motility clinic for 24 hour ph & oesophageal manometry tests...have you been referred? I found this wonderful website recently which does confirm that our sorts of chronic GI probs are indeed exacerbated by immune dysfunction & connective tissue disorders....and this website also is great at explaining tests, treatments & lifestyle management techniques too:
Really great reply Barnclown. At the grand old age of 49, my lupus is semi well behaved but I feel destroyed most of the time - this must be due to the reduced tolerance of my increasing age. I truly have forgotten how it feels to be energetic, full of life and pain-free.
Thanks for your very informative input - something there for most of us to take away! Xx
Grrrrr....I don't understand why this gradual cumulative debilitation isn't widely acknowledged. For sure, as I continue my detective work on this & other stuff that seems to be kept 'in the closet', I will be passing any useful info on here for you guys to debate.
Am slowly working my way through Thomas's AMAZING The Lupus Encyclopedia...this massive tome, more than anything I've read so far, seems to acknowledge the inevitability of gradual cumulative debilitation...after all: if immune dysfunction & connective disorder don't do it to us, side effects of our wonderful (I mean that...am NOT being sarcastic) meds will be trying to 😂😂😂😂 sorry, don't mean to be negative...just cannot bear to be in denial about this side of our stuff 🍀🍀🍀🍀
Excellent report this I've had this 4 times now goes then comes back with a vengeance I told them last time me knee was bad they said MRI showing nothing they whent in for a look and showed me pictures that looked like the dark side of the moon all severely stretched inside knee worn u need half a knee phisio said but some how I pulled it all back could walk for miles then 2 years later pain in ankle like i had pulled it then whent into knee other leg ligaments week then if me hands didn't start inflammation again and feet inflammation I watched them comming up I've been on Prednisone 5 mg for a bit but bursas also seem to be a problem and sweating in bed at night The wolf has returned yet again
I am in California and it breaks my heart that timely access to healthcare for you all in the UK can be so difficult. I thought it was bad when I had to schedule 6 weeks out for a new pt appt with a rheumy then one of you said u had to wait for a year!!!! Having a chronic complex illness is bad enough but then having difficulty with access to healthcare is just another headache. I really feel for you my friends 😞
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