Hi beautiful people. I hope that you are all keeping safe and warm in this cold snap. Finlay just loves the snow. He races and skids around the garden, digging, rolling and eating it, then in fir a cuddle to warm up, He has definitely brought the joy back to our lives.
I had my first Rheumatology appointment in over three years and guess what? It went so well. I was very anxious beforehand, so much so that my BP set the alarms off at 268/198. I was asked if I had white coat syndrome lol that did make me giggle and just like that the BP dropped. Phew!! The nurses were just lovely and to,d me that Dr OBerin was the most compassionate Rheumatologist they had worked with. I was listened to and included in the plan which was an absolute first. He cannot exclude Lupus but feels currently my most active issue is Bechets. I am to continue with the colchicine and low dose Hydroxychloroquine ( 200 mg). He actually joked that he will be writing on my notes in block capitals DO NOT GIVE THIS WOMAN AN INCREASE OF HYDROXYCHLOROQUINE!!! given my eye issues. He gave me a steroid injection to calm things down and wants me to have eye tests every six months, including OCT scan. I am to let him know if I get repeated flares and then he will put me on Methotrexate but wants to try low dose steroids first. I am to use the three in one mouthwash at the first sign of ulcers and he is referring me to ENT to look at my nasal passages and vocal chords as he feels the croaky voice is a result of inflammation. He is even going to contact Gynaecology to enquire if there is an alternative to Lidocaine ointment for the genital sores. Wow, honestly I am so so relieved and grateful.
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CecilyParsley
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I am so happy for you, Cecily. I bet that is the rheumatologist you had an initial phone appointment with, right? I remember he was extraordinary. It is a relief someone has finally offered his opinion of what is the most « out there » diagnosis at this time. And I like the way he says directly that he cannot rule out lupus. That may just be quiescent now. But he treats what needs to be treated!!
yes it was him Kay, well remembered. We all deserve good treatment and doctors who try to help but honestly as far as a Rheumatologists go I have not had one who included me in the discussion and decision making before. I hope now that my new GP will look past the previous diagnosis of hysteria that has plagued me for the past four years 🙏🏻 Xxx
That will certainly cause medical PTSD. You know, for those of us with difficult to diagnose illness, fear of that label is worse than fear of the disease. I am glad I asked the rheumatologist on my consultation forty years ago if he thought this was « all in my head. » I didn’t even know what a rheumatologist was back then.
Why don’t you have these recent records sent to that GP? “Just thought you’d want to know of the improvement in treatment of my autoimmune disease. “ haha
I doubt they would care Kay. After 31 years they just transferred me to another surgery, not even a discussion. When I queried it they said it was the Health Boards decision. When I rang the Health Board their exact words were the surgery requested this they want you gone 😱, When I said I understand that there are exceptions for chronic ill health she sighed and said what’s wrong with you. I said Lupus. She told me she was not a clinician and needed to speak to her colleagues. Two minutes later she returned and said Lupus is not serious. I said I want to complain and she replied it will not do you any good. Such appalling, unprofessional treatment across the board really so I am hoping that the new surgery might have a GP who gives a damn. Xx
👏👏🙏 I sincerely could notbe happier for you, to pop in and see your post is great and I can feel your relief and hope you continue on this positive road, you so deserve the compassion and it offers me hope to read your post.To be listened to and included are not words normally associated with the way you've been treated so YAY , but it should be there all the time for us all and you should not have had to wait four years to get here but ....
so pleased for you take care 🤗and Finlay looks adorable and glad has bought joy back to you too 🐶x
Thank you so much. It is such a huge relief for me. I hadn’t really accepted the huge stress and anxiety caused by the hysteria label or how negatively I would be viewed and dismissed by my GP afterwards. I was like a zombie after the appointment. When the nurse checked my name I struggled to say it. She was so kind and said I understand it is all new to you. Then I laughed, apologised and said if only that were true. She then said oh dear have you had and just like that reeked off the names of all the bad experiences I had been subjected to over 14 years. It must be demoralising for the nurses to witness the fallout from such appointments too. This one though gave me real hope that the coming years will be better.
I sincerely hope that things are better for you too?
Finlay is a little treasure even if my garden looks as if we have moles from the holes he has dug and my lawn is systematically being stripped which he is very proud of. Xxx
What an amazing appointment, if only all Rheumatologists were like that.Do you think he'd be willing to see everyone else in the UK as well.
I'd be willing to wait years to see a Rheumatologist that had some real sense ...... Let's , face it's been years since I've seen one so far!
Take care and hug the Finlay from me . I ventured out in the snow yesterday to take photos at Pen Y Pass of Snowdon , but no accent for me , although a lot of crazy folks were doing it. I actually saw someone who had done the walk up in shorts!!!!
Take care , as a fellow funny ulcer sufferer I know your pain , Bee
Thank you Bee, it was such a huge improvement in any of the ones I have seen before, including St Thomas’s. I have recommended him to se many people when he first rang me three years ago then the last conversation was rushed and he had put the phone down whilst I was still speaking. I was disheartened but then it was peak Covid. It has given me some hope that life will improve for me and I will let you know what Gynae say about the ulcers. You have my sympathy they are the one thing that make me cry. How lovely that you ventured out, People in shorts in this weather must have no sense no feeling lol xxx
He was also insisting on breaking the beautiful peace of the scene by playing music on his phone. He's lucky I have Fatigue or I might have been tempted to give him a little shove off the edge.Although Karma did step in and sent a child on a sled into his shin and he hobbled off . Whomever thought we'd be thankful for a runaway child.
I saw some very cute dogs in sweaters and one just like Findlay in a bobble hat , I think he could with one from the look of the weather outside your window.
I can hear the relief through your words. I'm so pleased to hear you have felt listened to and explanations have been given. I have no doubt all of this with help you on your road to recovery x
I’m an avid cyclist, cycle many miles. Trimovate prescribed by my rheumatologist / dermatologist was a game changer. Steroid/anti fungal etc. Its very soothing and comforting. Ignore the staining yr panties caution, I’ve never had an issue!!! Has been on my repeat prescription for a few years. Wouldn’t be without it!! Look it up!
Very happy to hear you had a good appointment. It sounds like your team are very knowledgeable and professional. But most of all compassionate and prepared to listen to your needs. What a wonderful NHS we have.Big hugs to you and Finley! Animals really are the best medicine. X🌻
Yes it was relaxed and friendly. I felt heard for the first time in years. Finlay has been a much needed source of comfort and joy to us after an awful year thank you xxx
Yes it certainly was Chris, unexpected as I have become accustomed to poor practice and being fobbed off. I have hope now and that is priceless. Finlay is just girgeous. He is a cuddle monster, we are so fortunate xx
That’s great news! I am currently going through that referral process and the neuro appointment was a waste of time saying he thought I had functional neurology despite the fact I have since been diagnosed with having lupus with a skin biopsy. I was so frustrated as he didn’t even listen to me. He was an hour late for the phone appointment too!
It is so demoralising and having someone to listen must be such a sense of relief. 😊
Bless you I know how that feels. I have had my share of rolled eyes, dismissive attitudes, conflicting diagnoses but the “ hysteria diagnosis was the bottom of the pit. My diagnosis of Lupus was made in 2009 by a Rheumatologist and confirmed by a Haematologist. Then a new Rheumy and it changed to Bechets and Fibro, then to Low Grade Lymphoma so I was referred to St Thomas’s for a second opinion. They confirmed SLE “ unless someone else has taken your bloods for you”. The Local Rheumy then challenged this and they downgraded me to UCTD and discharged me. Since then I have had a different diagnosis with every Rheumy MCTD, Fibro, UCTD no Fibro so I have been despairing. Now I have hope again and the relief is huge xxx
Whohooo!! 💃Happy dance for you Cecily 🤗 Such good news and a great relief for you to be listened to n treated with the kindness you so deserve. Onwards my friend!! 💜🌈😽😽Xx
Hi Cecily nice to hear that at long last you have someone who listened to your problems and is doing something about them what a change I have not seen a rheumatologist in over two years I keep hoping an appointment will come through the door soon
It's a good start to the new year for you lets pray that it continues i'm so happy for you sending you new year hugs xxxx
I think cecily you've more than earned this for all that you've struggled with over the years!. I'm thrilled that you've got this lovely Rheumy who will look after you properly!. It proves they do exist so is heartening for us all on forum.
Wonderful too, he feels your more Behcet's so is treating you for that. A diagnosis at last!. That too must be such a relief for you.
Beautiful pic of Finlay, he's brought you luck. Keep warm and cosy. Take careXx
Thank you lovely. I must have looked stupid at times because I was prepared for Indifference, dismissal or more of the same but it was so different I just wanted to hug him. I am hopeful now that I will get some help at last. Xxx
No patient should ever be treated with indifference. Never. Apologies for being hurried, stress or late but never indifferent. And to think they learn in training the challenges of lupus, rheumatoid arthritis and Bechets disease.
Maybe our rheumatologists should write a training manual for communicating with patients like us! It know mine wrote an article with a social worker about the challenges of living with lupus. I should try to get that.
I agree Kay but it happens and it keeps happening. How can we stop it? If we complain we are troublemakers. I was reminded of that every time I got a new Rheumatologist..if you are not happy with my treatment you can always go elsewhere, but then you have had a lot of Rheumatologists havent you? I hadn’t even made a complaint myself, my GP was furious and did it for me. I wish I had the answers for everyone who has been gaslighted, disbelieved and untreated xxx
Thank you so much Daisy. Yes my boy is just so gorgeous. He has us wrapped around his paw. We are off to the theatre tonight so his Uncle Brian is pup sitting xxx
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