I'm finding it increasingly frustrating that my (now second) Rheum seems to be dancing around giving me a diagnosis and allowing me to have treatment and focus on helping myself. I think I probably have early Sjogren's, which is meaning I have half of the markers showing in my blood - SSB is the earliest to appear (plus pos ANA), and biopsy was negative. And a raft of symptoms I'm having which indicate AI from everything I've read.
So I was wondering whether anyone has gone private for diagnosis? I've heard about the early Sjo test in the US but I'm assuming no one has been able to access it here?
Thanks all x
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NatalieC
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I haven't much to suggest, as the test you mention isn't something I had heard of. As you already know, most of us find that getting a definitive diagnosis can be a lengthy business. Although I went private for my first assessment (in order to avoid the 8 month waiting list), I left without a definitive diagnosis, and 3 years on, there are still grey areas with regards to characterising exactly what is going on for me.
What is your (second) rheumy saying about your condition and/or the plan for further assessment and treatment? What do they say when you voice the concerns you mention? x
The Sjo early test is quite interesting, Bosch & Lomb are now able to test proteins in blood for saliva &co which means inflammation is there and this detects Sjogrens much earlier than the antibodies showing (if they appear at all!).
My Rheum's opinion seems to be my symptoms are fibromyalgia, and is doing his best to 'prove' there's no autoimmune problem. I've joined a big fibro group on Facebook any I genuinely struggle to find any commonality with the problems being faced. So far my rheum has had bloods done, nerve conduction tests and lip biopsy. I'm now 3 months overdue on my follow up appt, so unsure on the next steps, however I'm not entirely sure what else could be done. My symptoms are progressing, and I'm treating everything topically where I can - via GP prescriptions, guidance from optician etc. So I'm not sure where to turn next.. x
Thanks, especially after your intial 'false start', that's a frustrating situaion. One mistake I made with my early rheumy follow-ups was to sit and wait like a good boy until they sent me an appointment date. A month past its due date, I rang up the hospital appointments desk to ask if I had a date yet, and they said "nope". So I rang up the Rheumy Dept, to find that their "system" is that if you weren't given a specific appmt time at the last appointment, they would expect you to take the initiative and phone up to make one. Nowadays, I always ring the Rheumy Dept - not the generic OPD switchboard - and ask for a date. Sometimes they are able to find a cancellation and fit me in very quickly if necessary.
As far as the new test goes, I'm sure you know that this wouldn't form part of the diagnostic criteria for any AI condition. From a quick Google, it looks as if there are some queries about the number of false positives it may turn up....but I don't blame you for trying! Didn't a rheumy nurse say you had Sjogren's a while back? What happened there? x
They've now split our NHS booking department into care segments, so a certain part of the team only look after Rheumatology bookings - I've called them twice already and I keep being told I'm on the waiting list! I was on a 6m call back.. that was August. My friend is under the same dept and also 3m overdue on her's. I think they maybe swamped.
And yes! Oh man. It's such a mess 😂. My first rheum consultant was very rude and told me I was just overweight.. then her nurse called after she'd seen my bloods to tell me I had Sjogrens, but it was never on paper, they never sent me a letter about it. So fast forward to my new consultan, I explained the call.. And he tells me he doesn't think it's right, diagnoses on symptoms not bloods. Round and round we go!! X
Ps - what have you found re early Sjo test? It seems in America for at least 2 years this has been used to diagnose, and I've seen articles on its importance from Rheum and Ophthalmology perspectives as it's catching patients earlier with the 'up to 10 years for antibodies' issue.
I daresay you have looked into it a lot more than I did in a quick 15 minutes just now, so I doubt my "research" is very authoritative. For what it's worth, I tried to find the most recent stuff, and discard anything that seemed to be based on the standard sort of "promise" press releases that drug companies put out to generate a buzz around their latest product. This article seemed sensible - but it is over 2 years old now ophthalmologytimes.com/mode...
Other than 'keep pestering them', I don't know what else to suggest for hurrying up your review . Even if you find your rheumy is convinced it is FM, they may be open to medicating on the basis of your sympamatolgy (if that's what you are looking for). It should'nt be viewed as a 'final', static diagnosis anyway. x
Thanks, I'll have a read! I'm open to anything right now lol. My biggest fear is spending years self helping and damage is done from illness that should've been managed! I'm more than happy to take supplements and make changes to help myself as long as I know I'm doing the right thing.
Just this morning I've been given the name of a very good rheum consultant down South who specialisesin SS and has a keen interest in early diagnosis.. this could be ideal.. x
Hi Whisperit, I have also been a quiet good girl waiting for Rheumy apts which they have rescheduled so much until I have lost count and had it not been for the pain etc would give up.
Have tried telephone contact but getting through to the department is very difficult. Numbers lead to dead end.
But hats off to you for pro activity. Maybe glimmer of hope
Hi NatalieC & welcome. I am from Melbourne Australia and still have sero negative connective tissue disorder where all of my connective tissue gets very painful and sometimes unbearable. I am mentioning where I am from as UK laws & rules are different than ours. When I was first diagnosed, although it has never been given a name I had worked with the Rheumo who put so much time & effort in trying to find out if my disease was one that has a name yet and so far it isn’t. I now have a couple more Rheumatoid problems and have allergies since childhood which has led to anaphylaxis & I carry an epi pen when I remember, although I have been told by experts you should cRry 2 epi pens, go to emergency & get I/V cortisone & Phenergan.
I get so very frustrated but it is a fact of life that in many areas of disease they still have not found out what many diseases are yet and this is particularly true in Rheumatology.
Terrible to say but when I got my first swelling which was painful, red & full of fluid I could hardly put my foot to the floor, I was glad that they just had some evidence, some Drs will put this stress on patients and tell them there is nothing wrong with them, which in 99% of cases is total nonsense. This first one was one of my fibulas and my Specialist did believe me all of the time and was just treating the signs & symptoms. I have had it in other areas since. Unfortunately I moved to a different state & am still looking for a Rheumo who is as good as my first one. Luckily my G.P. Is excellent & knows I have various inflammation in my tendons, ligaments, bone, cartledge, was muscle, nerves, skin etc & she acts straight away with me as I have had some close calls with disaster and Radiology or where every I am at the time ring 000 (I know the emergency # is different in each country. I have gone through both the public & private systems in Australia & I will keep searching until I get the right Rheumo again.
One who will not drop the ball and will give you all of the tests available until they get a proper diagnosis & in the mean time treat me properly for my signs & systems (unfortunately I have a problem taking cortisone & many of the other treatments on option.
Sjogrens is still one of my possible problems but it & other things the experts suspect have not shown up on a proceeduresn or test as yet & I have had them all!.
I don’t know where you are based but I went privately to an Immunologist. It cut the time down to diagnosis. I was on Hydroxychloroquine within 6 months. Look on line for Doctor/Consultant with Sjögren interest. Hens teeth but I found one. Call the BSSA they will help you. It was a Doubting Thomas type Doc’s nurse who called me to say I also had Discoid Lupus. Thanks to her. If you are south England I can help.
Thanks Cas. I'm up near Manchester but looking at a Rheum Consultant in Swindon.. my thinking is, if they're a top notch doc, I'll travel! Glad it worked for you, makes me think it's the right way to go too...
Here here! I'm starting to feel like it's my job to enable this pulling together of info and sharing it, so at least someone's getting a clear picture!
That is the lady I'm intending to visit I've heard a few people say how brilliant she is, so it's worth a shot. My 'journey' started exactly a year ago, and I'm none the wiser now if I'm honest, despite a load of tests and appointments - I've been under 6 consultants (Rheum, Gynae, Endocrinology, ENT, Orthopaedics, and now Neuro) and no one is talking to each other, all trying to either fix bits of me, or work out what's happening to their component part. It's tough. My list of symptoms is growing constantly.. only this week I've had 3 out of the blue episodes of presyncope/about to black out, it's scared me silly. So I'm hopeful that a visit to E Price will begin some serious looking into stuff and not passing it off as nothing. Thank you so much for your post, I'm not quite so alone with thinking the diagnosis I received just didn't seem right! xx
It's like you ready my mind My mum was getting sick of all the NHS letters all over the place, so had created me a big ring binder with tabs for all the different specialities - my GP let me know yesterday that they're fine with me arranging a time to pop down and trawl through my letters on the system and print out any missing pieces, so that's great. I know there is info from things like colon biopsies from years ago (oh the fun I've had lol). I've also sent an access request to another trust today for a copy of my notes which I haven't seen (the 1 appt with the rude lady!) as I'm not sure if that will have Sjogren's documented on my file. I've also just emailed the hospital to ask about appointment availability etc, so hopefully I can get that arranged too. I'll have a good look at BSSA info, everything helps us understand more and look after ourselves! I keep seeing consultants advising patients that no meds is better, then aggressive treatment when they're very sick.. but noted E Price doesn't go by this theory. I will trust her on that one!! xx
Thanks lovely. I'm in one of those moods this week to just grab it by the horns and get things moving, after too much sitting around and waiting for test results and biopsies! Agree re family history - sadly it seems my paternal grandfather is a wealth of autoimmunity that he's shared with us, he finished on ill health in his 50s with RA and neuropathy so bad there was no nerve conduction at all when they did the test.. my dad has chronic pain, chronic dry eye and is developing 'bent' fingers, my uncle has psoriasis, my auntie is being investigated for AI also. Nightmare! And agree re meds. I've ordered top end magnesium, zinc, omega-3, collagen, in hope things are alleviated. Hoping I see E Price sooner rather than later though. Thanks for all your help, I shall keep you posted on how things go. Fingers crossed! xx
Unfortunately for my uncle, his psoriasis is head to toe - I'm not entirely sure what sort of treatment he's had or been under, as we're not particularly close. However I know he was complaining to my parents his knees and elbows were hurting - when they told me, I just raised my eyebrows and thought.. here we go, hello autoimmune problems! I luckily have not experienced any rashes, so hope I can see E Price and discuss everything, and find a pathway to some self-care and maybe medicine if she thinks I need it! xx
Just to update.. seeing Dr P was hugely beneficial. After a thorough chat and examination she said definitely sicca and believes I have Sjogren's, which coming from a top UK Sjo Rheum is more than enough for me. She's written a great advisory letter to my GP for pilocarpine and estrogen cream, and my Rheum for hydroxy potentially. I've got a call with my GP tomorrow so fingers crossed they're helpful, and still no appt for my NHS Rheum.. appt should've been in August! Meanwhile I've had major knee surgery, hemithyroidectomy, a tilt table test next week and I cannot wait for my holiday to Tenerife now 😂 x
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. Even if you find your rheumy is convinced it is FM, they may be open to medicating on the basis of your sympamatolgy (if that's what you are looking for). It should'nt be viewed as a 'final', static diagnosis anyway. x
I've heard a few people say how brilliant she is, so it's worth a shot. My 'journey' started exactly a year ago, and I'm none the wiser now if I'm honest, despite a load of tests and appointments - I've been under 6 consultants (Rheum, Gynae, Endocrinology, ENT, Orthopaedics, and now Neuro) and no one is talking to each other, all trying to either fix bits of me, or work out what's happening to their component part. It's tough. My list of symptoms is growing constantly.. only this week I've had 3 out of the blue episodes of presyncope/about to black out, it's scared me silly. So I'm hopeful that a visit to E Price will begin some serious looking into stuff and not passing it off as nothing. Thank you so much for your post, I'm not quite so alone with thinking the diagnosis I received just didn't seem right! xx
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