I’m new to this forum, so please forgive me for bleating, at 69; often think I’m lucky to have made it thus far. In brief, a childhood of more severe infectious illness, frequent fevers/headaches/ vomiting, followed by ‘Glandular Fever’ at 17 and a subsequent pattern which lots of you will recognise: joint and tissue pain, fatigue and ‘outbreaks’ of exhaustion and fever. Herpes laid me low and then ?M.E..
20 years back, after dry eyes, dry mouth, skin lesion etc. a rheumatologist said I was ‘fine’, but my G.P. thought Sögren’s and MCTD.
2012: diagnosed hypothyroid.
Now, luckily retired, but like to be busy, yet some tasks still put me on my back for days. Main problems over last 25 years have been renal symptoms and excessive sweating, day and night, plus inflammation, especially, ( it feels, anyway..) in neck and head. I’ve had tinnitus lifelong, numbness and tingling in extremities, mobility issues, migraine and dizziness. Is there any point in my going through, once again, the demoralising process of trying to get insight, or should I just accept? Is there a blood test which is conclusive?
Really grateful for any comments. Thank you…
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BlueMoon65
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we all deserve the best quality of life we can achieve so you should definitely start the process of seeing a specialist, after all you have nothing to lose and everything to gain. More advice will follow I’m sure from others who recognise your symptoms and knowledge is power which will help you fight your cause. Good luck, be strong, post here.
Your presentation of the difficulties you have would suggest there are good grounds for diagnosing a systemic autoimmune condition such as Sjogrens. And since you are clearly unhappy with the situation, the answer to your question is almost certainly "Yes".
Organising and presenting your history in a way that will help a clinician to answer the key diagnostic questions will help either get such a diagnosis, or else an explanation for your symptoms that makes sense.
If you qant ideas on what a clinician would lookn for, a starting point would be the LUK leaflets on symptoms and on diagnosis on this site (go to the Home page and look at the bar on the right hand side of the page).
In any case, you have symptoms that are seriously affecting your life, and you deserve a clear answer to the question of what is causing them.
You have suffered a long time with no answers or treatment. It may be worth seeing a Sjogren’s specialist. If your GP thought you may have MCTD that could have been in the overlap. You mention the dry eyes. If you haven’t seen a specialist in a long time, you may benefit from new testing such as lip biopsy. I don’t remember that that was being done when I was undergoing tests.
Sjögren’s is particularly hard to diagnose because of often negative antibodies. It causes a lot of other systemic issues like you describe too.
Maybe people here can recommend a Sjögren’s specialist or a good rheumatologist willing to think outside the box.
I was diagnosed with SLE ans and Sjogren syndrome in feb 2022. I am 74. I share your frustrations and many of your symptoms esp the day and night sweats , the response to was “. Oh dear”” when it was the body saying something is far from well.
I was convinced of lupus for 15 years.
4 rheumatologists told me I definitely didn’t have lupus, but thankfully when feeling utterly desolate the fifth rheumatologist diagnosed me this year. I am now having to undergo many tests and investigations as the lupus has wreaked havoc on many organs during this period of denial by the so-called specialists. Hang in there, Go One more time and demand that they look at you from a clinical perspective not just the result of a blood test, because that was the situation that I came up against time and time again. The probability is that I had lupus from around 12 years . Try not to give up, and I hope that you find a knowledgeable and sympathetic rheumatologist.
I completely empathise with the dilemma of whether or not to keep pushing for the correct diagnosis and treatment. Took me years to get autoimmune diagnoses when could have been done in days.
I dont know what tests they have carried out and when. But, bearing in mind some of the symptoms u mention (dry eye and mouth and fatigue) and the opinion that your GP gave, it may be worth getting tests for sjogren's.
The criteria and what need to meet are shown below. But written quickly (and so please double check is correct). -
THE CRITERIA
1. Schirmer's test (for dry eye). Piece of absorbant paper.
2. Test for sjoogren's specific autoantibodies - anti-SS-A and SS-B.
These are included I think in the "ENA panel" which is a screen for a number of autoantibodies associated with different autoimmune diseases. So might be useful even if u dont have sjogren's.
The ENA panel might also indicate if have other sjogren's related autoantibodies such as RO 52.
ANA test. Standard test for autoantibodies. But this can be negative even with sjogren's.
3. salivary gland biopsy
This looks for inflammation in the salivary glands - one of the principal targets of sjogren's.
4. Sysmptoms of dry eye or 5. dry mouth
e.g. have had at some stage dry eye for at least three months. Dont need to have it now
6. Objectively low salivary flow or having had swollen salivary glands,.
WHAT NEED TO MEET CRITERIA I.E. TO GET DIAGNOSIS
U dont need to have all these. Just 4 of the 6 above I think. But these 4 must include either the positive lip biopsy (No 3 above) or positive autoantibody test anti-SS-A and SS-B. (no 2 above).
Probably the easiest/quickest first test to get done would be schirmer's as they just put absorbent paper touching eye for few minutes. But also the autoantibody test which GP should be able to order. But make sure they include ENA test and not just ANA and that test includes test for anti-SS-A and SS-B and ideally also RO 52.
In theory this could all be done (with wait for test results etc) within a few weeks. Though in theory and in practice are not same thing in NHS atm.
Everything above gets a yes from me too apart from, if you’re in UK, then I have always been told by eye doctors and experts that it’s easier and more reliable to go to high street optician. You can make a appointment with any nhs optician to ask for dry eye slit test - or one where they put yellow dye in eyes to see how quick it passes over the eye surface - can’t recall what it’s called. It is far less uncomfortable Schirmers test, which apparently only rheumatologist’s run these days in absence of proper dry eye testing equipment or the training of an optician. I found the only schirmers I had years ago painful and saw my optician after who said it’s not a good or useful test to do nowadays. If found to be dry then ask the optician to write down their findings and take with you as evidence for GP - or better still to a rheumatologist who understands Sjogren’s.
That makes a lot of sense, Old Ted. I just happened to have an exam by an optometrist. She did do something with my eye to test for dryness so I concluded it was the Schirmer’s test. Since you mention it, I think it was what you described and painless. I just looked at the notes in my portal. I believe it comes under the slit eye exam section.
A rheumatologist certainly could not do that test, so yes, I think here,too, it would be better and less painful first to have an eye evaluation.
I wish I had known this forty years ago when truly suffer to with dry eyes, nose and even ears! Of course, the medication is so much better now. I never found artificial tears helpful except for the moment I put them in.
thanks for asking Kayhimm I’m okay - just recovering from what they think is Stephens Johnson (spelt?) syndrome as an extremely rare reaction to second IViG. Apparently T cells have good memories or something? I wound up in A&E with huge bleeding scabs and blisters on lip and inside mouth - horrific!
Thanks to helpful young dermatologist and my bewildered consultant I’ve been diligently removing scabs with Vaseline, applying Dermovate potent steroid ointment to the bleeding skin under and to my gums plus steroid mouthwash 4 times daily.
And at last it’s gone from shockingly awful like large blackberries attached to lower lip to just minor black scabs and no more bleeding if I smoke! And at last gums are much better too. Had antibody blood test last week to hopefully exclude pemphigus vulgaris which the dermatologist suspected. Won’t get that result for ages though but the other dermatologist thinks rare/ unheard of IViG reaction causing Stephens Johnson is better fit now that it’s clearing up.
No more IViG for me! It wasn’t working for my autoimmune gut dysmotility anyway though so the one year trial probably would have not gone anywhere - the rheumatologist and gastro have already concluded it’s all Scleroderma gut with some Vasculitis
Oh, how awful. So sorry you had to endure that. I know it gets discouraging with these gut problems that don’t respond well to treatment. Let’s hope new drugs are in the works.
That’s really helpful…thanks so much. The Schirmer test was pretty crude - literally bits of paper stuck inside the lid, timed, then removed! Really sore and apparently useless! I will go back to my ophthalmic optician.
yes my 1st optician who diagnosed severe sicca about 8 years ago was scathing about Schirmers and told me to refuse to have this done by future rheumatologists. The next one wrote a letter for me with his findings - 3 types dry eye typical of Sjogren’s. He said this barbaric test will often force tears even if they are just very substandard emergency tears so really not good. I refused further and now under hospital eye clinic consultant for yearly review. They were horrified too about Schirmers said completely unnecessary and unhelpful these days xx
You are so right about the Schirmer’s test. Looks like it is controversial - concern and reliability and patient discomfort. I wonder if after all the studies are done, the recommendation will be as your optometrist indicated.
Thanks so much for all this information. I did have the Schirmer test in 2002 - I’d already had such dry eyes that I once had to stop in a lay-by driving to work when my eye closed shut and wouldn’t open again. But the rheumatologist decided not dry enough! My GP gave me artificial tears for ten years, and he could see the lesions on my arms from, I assume, Sögren’s. But I will try to request those blood tests. It is encouraging to hear others’ experiences. Thanks again.
There is a big movement among Sjogren’s experts to decrease time to diagnosis. It is helping. You were evaluated a really long time ago! I think they are doing a much better job of diagnosing people now.
I only see studies of lip biopsies going back to around 2007. It is possible it wasn’t even common practice when you were undergoing tests for autoimmune disease.
You have gotten great responses here. I hope you are encouraged to get a second opinion regarding autoimmune disease. You must have had positive blood tests for your GP to have been considering MCTD. If possible, get all of those test results.
I have all negative tests for Sjogrens but overwhelmingly have it and I was diagnosed by symptoms. I did test at a positive level for double stranded dna so got unexpectedly diagnosed with Lupus as well. Depending on where you are in the country, someone here may have a decent Rheumatologist. It's very hit and miss. If you are near London there is the London Lupus Centre. I see my Rheumatologist privately in Swindon and she is an expert in Sjogrens syndrome. I go private as you get more time and can discuss more but she sees NHS as well from many parts of the country. If your Sjogrens symptoms are a certain amount you can be diagnosed easily by just this without any further tests. Hope you get somewhere but getting a recommendation from someone helps. If you pay for an initial appointment you can see who you like, where you like, easily. You can always transfer back to NHS after it's no problem.
hi - could be wrong about this because I also have other CTD and autoimmune - but think you can only be properly diagnosed and treated by antibody or salivary gland biopsy or unless you already have anti Ro or another antibody or positive salivary gland biopsy or are already diagnosed with an autoimmune connective tissue disease such as a lupus, scleroderma, rheumatoid arthritis or myositis.
British Sjogren's Association helpline were very good at explaining diagnostic criteria on this to me some years ago but that’s what I’ve always been told at least. Worth phoning BSSA to double check: 0121 478 1133
You would probably get prescribed eye drops and saliva stimulants with just sicca syndrome but not a treatment such as Hydroxichloraquine or get seen by a rheumatologist if only had sicca and no other specific criteria or other diagnosed CTD.
My penny’s worth BlueMoon65: it wouldn’t be worth going to the trouble of pursuing if you can’t get a proper diagnosis access the systemic treatments or be monitored regularly by an NHS rheumatologist I feel.
well I’m glad to be useful. In your shoes I’d push for further blood tests with full antibody panel and then, if nothing shows, you could decide whether you want to try a more systemic treatment - in which case push for lip biopsy. I have found that the treatment I get for scleroderma, Mycophenolate and others, have not worked well for much apart from preventatively for my lungs.
But for the Sjogrens, Mycophenolate has worked brilliantly - so I never understand why people say there are no treatments for Sjogrens other than eye drops, oral moisturisers etc. Scleroderma is much less treatable and more progressive for me x
Yes sorry you are wrong. I'm fully negative ro/la but Dr price didn't bother with lip biopsy either as I had all of the symptoms of sjogrens. It wasn't worth it in her opinion as I ticked all the boxes without it. So fully diagosed with no positive tests. Many of us here have negative blood tests and that's not uncommon for sjogrens or lupus. That's why so many go undiagnosed for so long. Only a couple of weeks after my sjogrens diagnosis did I get a positive dsdna for lupus. That's why it's taken 30 years for me to get to this point unfortunately. I say never give up if you know somethings wrong.
But surely the point is that you did later have dsdna so if you wanted stronger treatments for connective tissue disease you could get them? And what are "all the symptoms of Sjogren's" please? I have a multisystem disease with organ involvement including lungs and severe gut so I wouldn't want to just get given eye drops and vaginal moisturiser - which GP had already given me. I want access to strong medication I"m on now and monitoring for stuff like neuro involvement, lymph gland swelling and my severe gut issues. So a formal diagnosis by lip biopsy has made a big difference to the treatments I've been able to get. Even getting prescribed preservative-free eye drops and Duraphat toothpaste only happened once I'd been officially diagnosed by lip biopsy.
And Dr Price is the only one I've heard of who would make this diagnosis and treat systemically and not everyone can afford to pay to see her - especially not these days.
However I do agree with you that we should never give up if you know something's wrong and there are effective systemic treatments we could be getting.
Did you go to or zoom in to the Sjogrens annual meeting last week? They talked a lot about lung involvement and also joint pain. Basically a huge amount of internal involvement with Sjogrens not just dry outside it was eye opening. The standard medication you can get as far as I know is hydroxychloroquine and I am also on pilocarpine which gives you moisture in the eyes, nose, mouth but also as I learned this year at the conference, it helps with your lungs. Unless you have other autoimmune conditions or a particular organ invovement, I'm not sure there is much more medication you can take internally but you'd have to check.
Dr. Price is around £150 for about a 3/4 hour consult. I saw her by chance as she is my local Rheumatologist in Swindon. I see her once a year so £150.00 is not so bad to see an expert for a decent amount of time, then you can transfer back to an nhs Rheumatologist near you if you want to. All my annual blood tests are done via the GP with a note from Dr Price so I don't pay lab fees. I got all my medication before I had any positive blood test. So medicated and diagnosed with no bloods to say I even had Sjogrens and I still don't have positive bloods.
Maybe you just need to research the Rheumatologists near you and their particular interest within their specialty then you can ask your GP to refer you to them specifically. If you pay privately the GP just a writes a referral to whomever you like, no questions asked. It's worth checking out your local Rheumatologists via Bupa or BMI websites, most of them work within the NHS as well, especially if you are not happy with your particular specialist. Even if you have one appointment in your life privately with an excellent Rheumatologist it can push your treatment forward years maybe. Hopefully the BSSA website will post the annual meeting for all to see as there were some excellent speakers this year, I took loads of notes. We got free samples and if you email hello@oralieve.co.uk or call 01582 439122, you can request free samples for mouth products. They said you can get their toothpaste and dry mouth rinse on prescription.
thanks for all this. As it happens I see Dr Price annually myself but I live far away so by VC. I have great doctors where I live but sadly they don’t specialise in scleroderma and so I see Dr Price about this as she is the one who diagnosed it. My antibody is for this not Sjogrens and she writes to my local nhs rheumatologist - who specialises in lupus and rheumatoid arthritis and doesn’t see systemic scleroderma patients.
Dr Price said last week that scleroderma is the most untreatable and serious disease she sees and she also does a lot of work with the scleroderma and Raynaud’s charity, SRUK.
No one knows which disease has gone for my lungs and guts - the latter are more or less destroyed now - former just about maintained by maximum Mycophenolate. We discussed Rituximab and Tocillimab (not sure to spell?)
I’ve never been in a situation like BlueMoon 65 thankfully as always lucky to have been taken seriously. So that is I’d why I queried what you were saying about being diagnosed with Sjogrens on symptoms alone as I couldn’t get this diagnosis myself where I live. So I did have a lip biopsy some years back here and only saw Dr Price first time privately after the results showed very positive. She then added Scleroderma on symptoms but the following year my blood was positive for it too. But certainly at that time in my area lip biopsy or antibodies were the only way to get diagnosed and treated.
I had previously been misdiagnosed and already tried treatments for Rheumatoid and Lupus (Rhupus). In fact I have tried many of the systemic treatments but not tolerated them. I also have bad Raynaud’s and neuropathy.
Sadly I was too unwell the week before last to attend the conference even online. I’m just recovering from a seriously scary blistering skin and oral mucosa reaction to IV immunoglobulins got neuropathy. But I will try and catch up now I’m coming through. Thanks for the info.
I know she doesn’t charge much compared to others, including scleroderma experts at Royal Free, which is why I see her annually as she speaks to Royal Free professor for me.
But for anyone unwaged or living on benefits, especially in current climate, £150 is still a lot of money. I save up each month and my own nhs rheumatologist knows plenty about Sjogrens but not much about scleroderma.
Dr Price is just an all round expert on both and exceptionally knowledgeable rather than a typical rheumatologist sadly. She also really likes my local consultant and says what good treatment and care I get where I live compared to what I’d get in her area. But again, for the benefit of the BlueMoon65 - it was the lip biopsy and my high inflammation and scleroderma antibody that got me taken seriously.
I don’t know where I’d have stood if my symptoms weren’t also reflected in my bloodwork and if I’d been completely at the mercy of my GP and local hospital though. I do think a lot depends on where you live.
PS first appointment is £200 for 30 minutes her PA told me a few weeks ago. This is another reason why I try to see her once a year for follow ups.
Just saw Dr Price in August and she charged £100 for 20 mins. She must have put her fees up since then. Good you're near the Royal Free as my friend has had cancer surgery there on the NHS and they were outstanding. Unfortunately it seems once they find one autoimmune others seem to follow. I am starting to develop peripheral neuropathy since last year so seeing how long I can go before starting medication for that.
I put money away too for consultants every month but it's a shame we have to do it but realistically its the only way sometimes. I now pay for three different consultants each year as I have kidney issues and skin issues. All good fun. We just have to be informed about our condition and find a good GP too to work with us and push for the best treatment we can get.
Blue moon 65 - exhaustion is the thing that always seems to point towards an autoimmune condition. It's the top issue in my Lupus group. It was what kept me going and searching for answers as from my late thirties onwards I had the energy of my grandparents. It just wasn't right. Don't give up.!
I’m not near Royal Free - I’m in Scotland so I see her by VC. And I haven’t had Dr Price’s letter or bill yet so I’m only guessing my 50 minutes will cost at least £150. I was told 3 weeks ago that annual follow ups are £100 for 30 minutes but first time it’s double this price - just for BlueMoon’s benefit. She is worth her weight in gold though I know so I would highly recommend her too.
Hi BlueMoon65, I know how you feel because I also have been going through "something " and no dx in sight. As a toddler I was hospitalized with anemia and have been plagued by it throughout my life. I'm 68 and I know I have raynauds, arthritis, joint pain, weakness, utter exhaustion, dry mouth and eyes, I want to know what is causing this misery. I don't have much of a life anymore and almost all of my leaving home consists of Dr appointments, testing, labs, x-rays, CT or mri's. It's so frustrating!! I never thought this would be my life...I don't drink or smoke and never did drugs...maybe I should start lol. I hope your able to get the help you need.
We are of similar age…looking back, it feels like a series of marathons, doesn’t it? Friends seem puzzled that I don’t want to go on outings, but that’s because I’ve always been ‘invisible’ when going through a flare. Bet you’re the same.
I am the same, never going anywhere really...I had to retire early because I was in constant pain and that hasn't changed. Had a failed back surgery as well as a bunionectomy and a revision surgery for that so now my foot and part of leg are always numb and swollen...the doctor called it zombie foot, sounds funny but it's not, can be painful and hard to walk on so I limp and that sets the back off...never ending crap. I feel so weak sometimes I could pass out. I don't understand how nothing shows up! It's a living hell.
When it comes to a lupus diagnosis GPs are not up to the job generally.
You should be referred to an NHS consultant doctor in a hospital. You may in fact have to be referred to a dermatologist, rheumatologist, nephrologist, neurologist, Sjögren’s specialist etc. for all your signs and symptoms?
Your GP needs to be the gatekeeper and should be writing referral letters for you. It’s their job!👆
You cannot be a victim of all these guesswork “diagnoses”from your GP. Enough is enough! Blood tests must be done and blood results should be analysed properly by specialists.
We’ll, I was referred to a rheumatologist, but she was quite unhelpful…at the time I was really ill and struggling to keep my job, so I felt vulnerable to her quite dismissive comments. I know thousands of patients have similar experiences…My GP at the time was really supportive. He’s retired now…
Hi BlueMoon, sorry to hear of your troubles and getting the runaround with doctors! I have different symptoms to you, but I can share that it took me 8 years to get diagnosed with lupus, and it only happened because I pursued a second opinion with a specialist who was word-of-mouth recommended to me. Those second opinions can be worth it, but see if you can get a good recommendation!
Re: MCTD, I think there is a simple blood test for that. My old rheumy did a blood test for MCTD a few years back, as it seemed I might have it, but it came back negative. Some things like lupus are incredibly difficult to diagnose, but other things like MCTD can be quickly ruled out.
I think the big question here is whether it’s worth the time and effort to seek diagnosis. You have plenty to gain in terms of clarity and proper treatment; at the same time, I know what it’s like to go through all the testing and wind up with nothing. It’s exhausting and disheartening. Your symptoms, like pain, fatigue and dizziness, might make it hard to attend appts and get tests done too. So there’s pros and cons of pursuing diagnosis. At the end of the day, you are the only one who knows how difficult it is going to be and whether it is likely to be worth the effort. Imo it’s worth it if you find the right doctor: not only can they diagnose you, they can support you with the rest of your AI journey. It’s amazing to have a medical ally when you’re feeling terrible! All the best to you, and if you choose to pursue, I wish you Godspeed. 🌻🌈
Wise words…I had given up on diagnosis, and just tailored my life to ‘pace’ myself. Lately I’ve had lots more ‘bad days’, so I’ll probably try again. Thanks so much.
Hi BM65 and welcome to this very friendly supportive site.
We are the same age and my journey is very, very similar to your own. Amazingly similar, in fact!
To cut a long (>30 years) and convoluted story short, I've now got defo diagnosis of:
Fibromyalgia; severe OA; hypercholesteraemia; PA; ME/CFS; recurrent uveitis/possible early glaucoma; hiatus hernia; idiopathic drop attacks; dysautonomia........ I've recently been dx'd with Ehlers Danlos syndrome, which may account for many of my symptoms. I just wonder if this could be a possible dx for you??
In any case, it is certainly worth pushing for more specialist referrals. It was a great relief for me to finally get a firm dx of EDS (I'm sure you understand!) and to be told by my rheumy that I'm not imagining or exaggerating symptoms - I'm sure you understand this one!!
You are going through an awful time, but you have the support of all the lovely peeps here to help you along the way. And please let me know if there's anything I can do to help.
I so empathise with you. Mine path has been different but just as frustrating. I was diagnosed with Lupus at 39. But as the years went I presented with fevers. Firstly they were monthly then they became weekly with fevers up to 40 degrees for 3 days every week. They said this isn’t Lupus it’s got to be something else but we don’t know what. We will see you in a year. The years went by with no change. I was watching a Lupus uk on line video with a Dr Kaul saying he didn’t always go by the blood tests he looked at the person. I found he worked out of St George’s hospital In London. My Gp got me a referral. To cut a very long story short after blood tests and trips to other London hospitals they came up with Lupus. I’m now having a biological medication on Tuesday to stop the Lupus flares. It’s taken me just 40 years but at last I’m getting there I hope. Don’t give up love. It’s never to late
Thank you so much…it really helps to hear such encouraging things from you lovely people. I think it’s easy to lose confidence when you’ve tried for so long. I really hope everything improves for you, too!
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