LUPUS UK
21,689 members17,186 posts

Whaaaaat?

In December I ordered my meds online as usual, then requested to have access to more of my records online. I didn't expect much.

Today I went on to order more meds and make a general "I'm getting skinnier" GP appt (14 Feb is earliest) . I pressed various online options to see if I had more acess to my own information. I do.

What do I see? Systemic Sclerosis. From the date of entry it looks like it comes after my last appt from the connective tissue disorder clinic. Yes, that's my primary diagnosis, so now I know what my Raynaud's is secondary to. I'm so gumswizzled that nobody thought to mention this in passing it's making me very hot under my thermals. Anger may be a Raynaud's reliever today. At my earliest rheumy appts I did see on my blood tests that there were markers there for Systemic Sclerosis but that's all. I thought the markers weren't significant enough.

I might be on the wrong forum now but I think my malar rash gives me a free pass.

I'm writing all this before fully processing how I feel. Then I'll take a good look at the blood tests. Then I'll calm down by taking my own advice to others that the label doesn't matter as long as you get treatment. 😢

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WOW 😟....what a STUNNING revelation... even i am thinking: WHAAAAA 🤯....am SO GLAD you let us know LK 👍👍👍👍

😠 how could THEY not let you know this PRONTO?!!!!!!!!!!!! instead you learn about it This Way 🤨🤬

I need to let this news sink in too...but i must at least say: 🤗 PLEASE stay here with us...we/i would miss you dreadfully if you weren’t here...apparently rheumatology suspects systemic sclerosus in my case too...we are mostly all “overlapping” cases...I spend time regularly on the HU SRUK forum too (Scleroderma & Raynauds UK), especially over the past 2 years because my mouth to a**s dysmotility is something seen in scleroderma patients (also my simultaneous raynauds & erythromelalgia are very sclerosus...and i’m also managing lichen sclerosus)

😘🍀😘🍀😘🍀😘🍀 coco

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Thanks, Coco, you're a pal! I've had a quick zap through a condensed description, and, oh boy, the mouth to a**e problems are right there, aren't they?

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Yes, these probs are indeed Right There...there are folk on SRUK forum who are VVVVVVVV experienced re GI stuff...it’s a slightly different “atmosphere” there, but equally constructive. I value that forum GREATLY 🌟🌟🌟🌟🌟

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Think a stiff note to the originator of the letter to the practice/Practice Manager would be in order: "Is it not normal/good practice for such information to be shared with the patient?"

Bit like rape victims discovering their abuser is being released to live down the road from the national media...

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Very much so Pro. When I can process this a little more, i shall compose a stiff note. I always ask for copies of letters the specialists send, and never get them. Obviously I need to chase the practice harder to request copies from their system.

My 14 Feb appt is with a ⭐️ but part time GP who originally stuck the boot into rheumy when I changed to that practice and she spotted I'd been overlooked.

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Mind you - one imagines this MIGHT answer a fair number of questions?????

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Indeedy! I'm becoming very sure it's answering the increase in problems eating and retaining food . The problems have travelled.

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Do hope the 14th Feb turns out to be a Valentine rather than ashes...

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Yes stunned when read this too, how frustarting for you, to put it mildly !!!! The positive for all us MCTD people that sometimes diagnosis may turn to be more specific in the future or that we need to request our info too, might be very intersting, Take care Lou xx

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Thanks Louise. Being allowed access to my most recent notes ( so far) on line is a blessing. Sort of. At least I can now try to educate myself. Why do they treat us as though we lack the capability or don't want to?

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Hello. And “crikey!” What a way to discover your primary diagnosis!!! It’s really bad. Definitely a cock up worthy of a letter. This is going to take a long time to process but please don’t leave us. You are an amazing support to so many here. X

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I won't leave here. I have a malar rash badge 🤗 but when I get my head straight I will, of course, be on the HU SRUK forum more as well. All these auto immune conditions like to mix and match so it's hard to single one out anyway x

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Such very bad practice not to let you know by letter or phone or face to face that you have diagnosis of Scleroderma?! I saw your post on the SRUK HU yesterday and got quite a shock that you’d finally had confirmation - although I have felt -from the extent of your digestive problems and severity of Raynaud’s and other things you’ve said - that this would make a lot of sense.

Do you get copies of your clinical letters and blood test results at all? If not it’s a good idea to ask for them although I guess you can easily access them online so there less point now maybe? I can’t access these at all yet - I don’t think this happens in Scotland.

If you can face it then I think it’s worth writing a short letter to your GP asking why you have only just become aware of this diagnosis by default so they can question their colleagues and improve the system for their other patients with rare diseases - particularly when it’s hard to get appointments with GPs of your choosing. All they had to do was arrange a phone consultation.

I too am so glad you’re staying here LK. It’s very important for us longstanding members to continue supporting each other as cyber friends I feel.

Technically the only two communities I should be a member of are the Australian Sjögren’s one and Thyroid UK and a small hypertension one. The first is lovely but quiet and inevitably quite a few local questions about finding rheumies in Brisbane etc. The second, Thyroid UK, is one I try to avoid because so many of the posts raise my hackles and BP in so many ways!

And I do have mild Raynaud’s secondary to my SFN and am part of the CTD clinic under a Scleroderma doctor - so I feel it’s just about okay for me to pop by sometimes. X

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I'm assuming for the moment Twitchy that the scleroderma diagnosis/final decision was after my last rheumy consultation. The letters can't be seen online, but my practice are relaxed about handing out copies on request. Only my psychiatrist routinely copies his letters to me. No matter how often I ask, hospitals never do.

I'm saving my questions about all this for my appointment with Dr Verykind who was the one to spot the horrendous failures of my last practice and put them right. I have to wait until 14 Feb to see her. She's clearly considered Dr Verykind by others.

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Ach I have same issues getting to see my star GP LK and also extracting clinical letters directly from the hospital. It’s 2 months today since I saw my neurologist directly after sleep clinic and yet I have heard back from neither. I have to phone both to see what’s happened as last time it turned out they had sent letters and follow up appointments to a previous GP practice X 2 and a previous temporary address x 3?!! X

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Keeping track of them is a full time job sometimes.

I'd glady pay a small fee for stationery, postage and a few minutes of clerical time to be honest.

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Well I give up time to volunteering to improve healthcare services in Scotland LK so I feel my expenses forms are acruing and I feel they owe me quite a lot now for my own clerical time - never mind charging me a few wficv they haven’t done yet or vice versa. I’m chugging down a Starbucks with coconut milk for lunch before attending a meeting about my possible retirement from volunteering. And yes I’m keeping the receipt and claiming even if the whole lot comes back up a bit later!! X

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So sorry you had to find out this way. I'm the same as you all have malar, sun sensitivity, retinal vascular occlusions, reynauds, uveitis and ocular hypertension. I've been diagnosed with UCTD but I have antibodies for scleroderma CENT B. My rhuemy hints to my Dr that in her letters thinking I won't figure out what they are getting at ie"in keeping with the speckled pattern and centromere antibodies "I confronted her last week and she has done a new scleroderma panel. Didn't know there was one! I also suffer with painful burning in my feet either burning hot or cold. I mentioned erythemyalgia but she said it's probably the reynauds. I disagree as they are perminantly burning. I have started having spasms in my throat when I eat dry food I nearly choke. Also get weird paper cut/cat scratches appearing out of nowhere. Do any of you also have this? Is the SRUK forum on here or another page? Thanks and lots of love to you all x

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Hi there. Dryness and things getting stuck in throat and burning feet sound very much like Sjögren’s to me. Sicca aside the burning feet were my first symptom of Sjögren’s small fibre neuropathy and the swallowing issues have multiplied as I struggle with dryness in my throat and digestive tract right the way through. I don’t have a true secondary Raynaud’s but it took them five years to decide this!

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Yes, to the very dry mouth eyes and occasional bright burning feet. With the feet there's no in between! My dentist and optition have assured me that my mouth and eyes are not dry enough for concern. Some of my mental health meds have mouth dryness as most common side effect, and I've had that for a long time.

Looking at your medical records isn't for the faint hearted, or at least make sure you check what it means before panicking! I was glancing through a raft of annual blood tests taken last Oct, just checking for myself on cholesterol etc. Then I saw an entry that said "acute kidney injury warning stage". After some feverish googling it seems the lab results now include that if your serum creatine has changed significantly since the last blood test. NICE guidance has it simply to draw the GP's attention, and it often means little : you've recently had d&v, you have low blood pressure, you have a long term condition. It really does mean "acute" rather than chronic and in the majority of cases ( like mine) not a red flag.

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