My Rheumatology consultation by telephone today was such a positive experience. I cannot express adequately how relieved and emotional I was to have a Rheumatologist not only listen but want to help. His opening line was “ well I think you have had just about every diagnosis in the book, which must have been very difficult and confusing for you”. I actually did not respond immediately as I was truly shocked. But it just got better. He wanted to know when my symptoms started, what the rashes looked like, what the fatigue felt like, what were the size of the genital blisters, how long did they last, how many mouth ulcers and how often, what quality of sleep, when was my balance worse, how was my mental health, how is my quality of life, how controlled is my pain, how is my eyesight? I answered all his questions and found myself relaxing and chatting. I was able to tell him about losing my career, losing my confidence, feeling a burden, wondering if it was all in my head, just how bad I felt when told I had hysteria. He offered no magic cure but said one thing I can do is write to your GP and get her to prescribe dissolvable steroids and antibiotics that you mix with mouthwash and use four times a day. It is very effective in easing the mouth ulceration. He pondered whether the dose of Hydroxychloroquine for eleven years had modified the clinical features of Lupus? He told me I might have Fibromyalgia and that was nasty enough on its own by my leukocyte count, Vit D deficiency, high calcium, anaemia, genital and mouth ulceration, poor balance, burning hands and feet were all indicative of other issues. Clearly he said until he can see me in clinic and complete tests and examine me he is unable to give a definitive diagnosis. He actually did a sleep apnoea questionnaire which I scored very low on and a depression questionnaire which I scored quite high on. For the first time in years I have some hope at last that things may be better for me. How good is that? I did tell him that the only real support I get is from you wonderful people. Thank you to anyone who takes the time to read this long, rambling, emotional but triumphant post. .....he even thought I was motivated and was concerned about my poor knees with the treadmill.😁💪🏻❤️
An Hallelujah from me: My Rheumatology consultation... - LUPUS UK
An Hallelujah from me
That’s fantastic to hear. Fingers crossed he can make things a lot better for you from now on Cecily.
Thank you so much Cathyan xx
Oh my word cecily that was a pleasure to read... I'm so so glad you got someone who listened and took the time to go through everything with you.just having that alone and being told its NOT in your head lifts the spirits no end.onwards and upwards 🙌 xx
Yes I was so anxious and had decided I will not be pathetic anymore I would rather be untreated. He quite took the wind out of my sails. If I get nothing better than this, it is enough that someone in the Rheumatology Service actually took the time to listen to me xx
You are far from pathetic you like many of us are struggling with chronic illness.you are a tough cookie who will be heard and get the treatment and respect you deserve xx
❤️❤️❤️
Oh, Cecily, I am so happy you felt understood and cared for. Most of our illnesses do not have simple answers. This doctor took the time first to try to comprehend how it would feel to be a complicated case like you with multiple diagnoses and no consistent treatment plan.
Hoping for better times ahead!
Xk
Thank you Kim. It was amazing for me to hear that he understood just how frustrating and depressing it must be to have Consultants say something different at every turn. That was a huge barrier for me to overcome in terms of having faith in someone. I really do have hope that at least my consultations will now be far far less stressful. Phew!!! Xx
Hi Cecily. I'm so happy you found a doctor that listens and cares ❤ and wants to help you. I know how great it feels to find someone like that.
Yes it does. Thank you so much xx
So glad to read that you had such a positive appointment CP, you must feel much relief at being listened to and for the Rheumy to spend such quality time with you. Great news! 😘🤗
Thank you so much yes it was very positive xx
Oh I’m so pleased for you - sounds like it went very well xx
Thank you so much xx
Oh my goodness Hallelujah! At last you have found someone human and decent to take you seriously. So happy for you! 🤗🌻
Thank you so much xx
I understand what you’re going through. My lupus constantly makes me feel horrible. I don’t know from day to day how I’m going to manage . About 3 weeks ago I needed a wisdom tooth pulled. So they put me on an antibiotic for a week. Then a few day’s after July 4th I ended up with a UTI , and different antibiotics to treat it . Needless to say . I saw my rheumatologist Thursday. I’ve had so much pain on my tongue. A lot of the vitamins I have to take. Caused a horrible burning sensation. Well I found out . With having lupus, and low immune system, plus antibiotics. I have adult thrush . So I’m being treated with prescribed lozenges. Having this disease is very challenging. There are so many other health problems it causes. We have to be cautious all of the time. So we don’t get sick , or have a flare up . It sounds like you have a very good rheumatologist. That’s so important to have a rheumatologist that’ll listen to your concerns, and helping you find the right remedy. I hope you feel better soon. Keeping you in my prayers. God Bless 🙏🏻💜💙😊
Thank you so much. You are right anyone with autoimmune conditions seem susceptible to anything and everything. If there is a germ within a mile of me it gets me. Pleurisy, cellulitis, UTI, Norovirus all in the past year and I empathise with you I now have the dreaded thrush too. This Rheumatologist was the first to show concern and interest for the 11 years that I have been sick. I cannot tell you in words just how much that meant to me.I hope your thrush clears up soon. For oral thrush the best thing I found was Nystatin oral suspension. It tastes vile but it gets great results xx
Very happy for you Cecily. xxx such positive news..
Thank you so much 🙂
Wonderful! You must feel so much better just having been listened to and BELIEVED! Hope things continue like this and you get some real help . 👍😁
Thank you Barbara xx
Hooray!!! It sounds like we all need this rheumy 😊....
Yes indeed such a refreshing change xx
Hi Cecily Finally, a miracle has happened. You’ve found that special one. Someone who’s listened, heard your truth, and been non judgmental.
Reading through your message, I felt like Churchill the nodding dog. Oh yes, Oh yes, Oh yes. I thought you was writing my memoir 😂. It’s so frustrating isn’t it? mine is six years in the making of a possible diagnosis of Lupus or other ??? 😤 I have had two appointment’s cancelled recently, Rhumatology/Dermatology March/July, of which I understood ( Covid ) I drew a body map and had photos printed of my rashes ( Burning arms and face ) I then rang both secretaries of both departments, asked them politely for their email addresses to send my evidence to 🤞. My plan B worked in my favour. Both consultants have agreed to see me in clinic, one being this Monday as urgent. I was getting fed up with the eye rolling of some gp’s 🙄
Like yourself and many other’s, I won’t give up until some else knows my body inside and out 😘
Hurray for you too. I truly hope your appointments go well and that you too are listened to. We deserve nothing less whatever our diagnosis. Please let us know how you get on xx
Yes of course I’ll let you know x
I am so pleased that it went well for you CecilyParsley. At last someone is listening to you . Take care of yourself x
Thank you so much Seren xx
Oh, such a positive outcome. I'm so, so happy for you. So, good rheumies do exist - well, well, well.....! Take care and tuck his comments firmly under your belt, xxx
Thank you Meg. I was so high on hope I struggled to sleep last night xxx
Thank Lou. I hope you get this Rheumatologist too. I think you should ask to be referred to him. Honestly you will be amazed at the difference xxx
My goodness Cecily what a pleasant surprise that was for you to have somebody who wanted to know every detail of your condition, listen to your answers and try to help. He sounds very thorough and trying to get the full picture of all your symptoms and problems. That is such good news.👏🏻👏🏻 I’m really happy for you and will be interested to know how you get on when you see him in clinic. So lovely to hear of a such a positive experience .👍🏻👍🏻 Keep us posted how it goes when you see him. 🤗😘
Yes it really was so good. Whatever the outcome of his tests and examination I will know it comes from a thorough and detailed analysis and made in my best interests. I cannot ask for anything more . I have hope for the first time in years xxx
Brilliant! 😁 That appointment will have done you more good than any medicine! 👍🏻👍🏻 Take care Cecily. Hugs 🤗😘 Spottyx
Great news so pleased to hear you had a positive appointment 👍
Best wishes 🤗
Thank you xx
Most welcome and I hope it will now bear fruits for you , it’s great to hear something positive for you, and it’s as it should be, take care 🤗
Yes indeed. I was always an optimist but I feel more like Eeyore these days. My positivity has been drained to the point where I am scared to have hope. I know that sounds pathetic and I hate myself for it. I want to be able to laugh and really feel joy again. Life goes by so quickly and I am wasting it I fear. You take care of yourself too. It is amazing the support we have here. We can be ourselves, good, bad and ugly tears xx
Sounds familiar and no it doesn’t sound pathetic cecily just human, and yes I second that 🙌🏻👍🤗
And a HALLELUJAH from me too CP 🤗🎉
Well done..I'm probably not alone when I say that I had everything crossed for u on your appt time n was sending some cyber vibes that u would get someone understanding n thoroughly check u over..sounds like this doc is precious!! U were able to relax n thanx to your warrior training n your symptom diary u gave him a good thorough account of how things have been for u.
Onwards warrior woman!! 🏹🥊
I'm listening to Bohemian rhapsody right now n thinking might be a good track for your treadmill!! 😜
🌈😽😽Xx
Thank you so much Kat. I was so grateful to him. I don’t expect a magic wand but just a Consultant who wants to try and help and does not condemn me for being obese and lazy or hysterical. Bohemian a Rhapsody would be amazing. Currently I am walking to Rag n Bone man. I do so love his voice xx
Just so pleased for you this time & hope he gets to see you soon as well as giving your GP some useful guidelines
Thank you Florence xx
Its a great feeling when you find a doctor who actually listens to you... and then follows up. My husband was diagnosed multiple mixed tissue disease three yrs ago, which encompassed Raynauds, moderate to severe hearing loss, total tooth loss, hiatus hernia, fibroyds in his lungs which causes him a permanent cough, muscle wastage and more. He was very lucky to have been diagnosed under a great rhumatologist after three werks in hospital doing tests. He had previously had many lung tests, cancer, asbestosis and so on, with no follow up once the results were negative. He was diagnosed with asbestosis years ago....we now know he hadnt that at all....but since the mixed tissue diagnosis the follow up has been amazing and on going. He has many meds changes in order to manage it well and we are very happy with his quality of life now. It was all down to the Rhumatologist at the time who diagnosed him and the other consultants in the hospital who were ruling out all other possibilities. Best of luck on uour journey. May you get good care. 👍👍
Wow that is truly shocking. Your husband has been through so much. You must be so thankful that at last you got a good Rheumatologist and a diagnosis and treatment plan for him.I hope your husband continues to get the care he needs and deserves xx
Great news! Sounds like my journey. They all thought I was a hypochondriac! Which trust are you with?
Aneurin Bevan in Blaenau Gwent. I have to say most Consultants here are really good but Rheumatologists have been awful. Two Rheumatologists ago, a supposed Lupus specialist said to me “I have seen people like you before. Always complaining and gets referred everywhere and there is never anything found. Your main issue is Fibromyalgia and hysteria” I was devastated. I began to ask my husband am I making myself ill? Do I need to see a psychiatrist? The more you try to reason or argue your point the more people like him put you down as unbalanced. I used to get very angry and fight back but I fear the past eleven years have beaten me into submission. I cried during my telephone consultation with Dr O’Berin because I was so shocked that someone deemed I was worth spending time and effort on. It sounds pathetic but my husband always rages at me for saying to doctors I am sorry to be a nuisance. He always says you’re a patient not a nuisance. He is right of course. Which Health Board are you with? Xx
North Bristol Trust. Dr Gunewardena. Finally. I like him enough and he does listen. He doesn’t make me feel like an idiot. My old GP surgery was just a tragedy. I have a new surgery that has a team of caring doctors. I was also offered the ability to switch to Bath RUH as I am on the border of both. I will stay put for now. I hate switching around unless I have to. I want to see the same doctor. I think continuity is everything. I am happy for you! The anxiety created by them not believing you is awful! X
I am glad that you have someone who does listen. That is all we need that they actively listen and try to help. There are no magic wands and there is no quick fix I know but I agree continuity makes the world of difference when you get someone you can trust. Xx
You, now, as well! ❤️
So pleased for you.🙂 the result you needed to give you renewed strength & determination.
Yes it was, thank you so much xx
Great news! Press on, my friend! As long as we have breath in us, there is always hope.
Yes thank you so much. My hope had gone but I am hopeful now that I have someone who actually wants to help me xx
Hurray, about time some good news for once. So pleased you are feeling positive .
Thank you so much. A rare occurrence these days xx
Rejoicing with you. Lovely to read even your headline on the weekly update, then to read through the details. Wow! I so hope (And pray now) that this is the start of a meaningful working relationship.
NB: Your husband is right about the comment that you are not a nuisance but a patient who deserves to be listened to, believed, and given good care. I pray that the follow through is solid, as well.
Just a thought, maybe write a feedback letter of praise to his supervisor or however your Trust has set up (it will be on their website). Thankfully the NHS does have many really skilled and caring clinicians; like us, they are humans who are boosted by acknowledgement and appreciation. If you feel too tired, maybe you could just copy and paste your message to us.
Doing a little happy dance in my head and thanking God for some progress for you.
Thank you so much Harmony. Yes that is a good idea to write a letter I will definitely do that. It is so long since someone in Rheumatology listened without sneering or dismissing me. I honestly do not have a problem with doctors I am very grateful for all the great ones I have seen but why we seem to have a team of truly dreadful a Rheumatologists is beyond me. I have heard yesterday that there is another great young Rheumatologist who recently joined our Trust so hopefully the two newbies can show the way and shine a light on good patient care xx
Hear! Hear! ( oh, is that, “Here! Here!”) 🤷♀️ I mean yes and amen!
😂😂
Hie, that sounds positive it's good to have hope and something to look forward to. When you have a good consultant that helps a lot. Good luck with everything.
Thank you so much Blessing xx
Hi
Just read your post and pleased that you have had a positive experience. That is all we ask for is understanding of our condition as it can make for a lonely world without understanding. I have had lupus for many years and in approx 2010 started to have many new symptoms which I instinctively knew, wasn’t my lupus. Gp kept upping my steroids, which weren’t helping and I was finally diagnosed with fibromyalgia in 2014 by a good rheumatologist, who sadly I don’t see anymore as I moved. Wishing you all the best
Hi Josiah, yes thank God for a doctor who asks questions and actively listens to the answers. I have been utterly despairing with the last two Rheumatologists, one saying Fibro and hysteria and the other saying mild UCTD think positive and lose weight. I just hope and pray this one hangs around. I hope that you have a decent Rheumatologist now? They are worth their weight in gold. Keep safe and take care
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