This week I have a letter from Rheumy saying as blood tests are negative and biopsy negative that maybe I don't have SS. Okay. So positive blood results can be false but not the other way round? Maxillofacial surgeon said biopsies can can be false negative. Mmmmm. So does that mean the tests we are put through they can turn them back to front for what?
Next I had yet another tooth shatter down to the gum and an emergency appointment with the dentist. Stump patched up and then the dentist asks has my mouth always been like that. Erm your the one who has been looking into my mouth for X amount of years. Another referral to maxillofacial.
For over 2 years I've been back and forth to GPs with abdominal pain and at times blood in pee. X-ray's and scans show no stones. They seem fixated with kidney stones for some reason even though eGFR is well in the 60s but hey ignore that.
Before Christmas abdominal pain hit hard and needed advice so called 111 for advice. Totally embarrassed when they sent an ambulance even though I said I didn't want one. Refused to go to A&E, middle of the night. Didn't want to get there and be sent home in my PJs at 3 or 4 in the morning, can you imagine no money for a taxi to take you home 20 miles in your PJs.
Had to see GP regarding the 111 call (really?). Sent for yet another scan, gallstones. Yep I now have gallstones.
Oh I almost forgot the other week I had to see the respiratory nurse at the surgery for a check up and respiratory test. Seems I now also have the lung age of 105 years.
Hahaha you have to laugh and keep going.
I give up with doctors, if you test positive it's a false positive and if you test negative it's a false negative. Don't you just love medical science.
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Boudica1
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Sounds familiar and I agree the false positive in bloods is most annoying and nonsensical.
I have ANA with the pattern for Systemic Sclerosis and when last tested I also had an equivocal positive pointing to this disease.
But I don’t have the outer manifestations and my mild Raynaud’s has been very quiet this year. So the CTD doc says this was most probably a false positive result - although I haven’t been retested yet so not sure how he can say this? He muttered stuff about blood results being contaminated by pattern of ANA etc. I privately thought this quite amusing as he clearly thinks that I think I have Systemic Sclerosis - which I don’t - not yet anyway!
My lip biopsy was 100% positive which surprised all but me. My mouth really isn’t that dry but I was at least very glad to have confirmation of the cause of the neuropathy affecting my entire body including my face. And I was told that the lip biopsy is the only definitive test for Sjögren’s. But perhaps that is only if it’s positive? Never heard of a false negative for lip biopsies? Anyway he seems to have changed his tune on Sjögren’s now too and blames all my dental problems and cough on it despite me not having a particularly dry mouth?! So mine is not systemic and my neuropathy is unrelated to my Sjögren’s therefore?!
When my legs were biopsied 4 years ago for small fibre neuropathy (SFN) they came back negative. And yet 3 neurolgists have been prepared to diagnose me with diffuse SFN on symptoms alone. This is the gold standard test for SFN so I would never be able to try IViG unless it was positive so I guess they can sit confident that I’m not going to demand the extremely expensive IViG at least.
There are other diseases that can cause extremely dry mouth but, to be honest - apart from clarity for myself - being lip biopsy positive has got me absolutely nowhere with treatments and my medics are all still obsessed with blood results as indicator of systemic disease! So SS or not - the dreadful disintegration of your teeth needs treating and cause investigating. Could it be due to severe acid reflux? My friend has very severe periodontal disease that is a hereditary problem and she and her siblings have all had to have their jaw bones rebuilt but have no autoimmune diseases.
Max Fax should be able to investigate this as it is their job or should refer you on to Gastro doctor to look into severe acid reflux as the underlying cause perhaps.
But as far as my own experience is concerned max fax’s haven’t a scoobies about autoimmune diseases - well the two I’ve seen haven’t had anyway. So you would be better off seeing an oral medicine consultant I’m thinking. These have certainly served me much better than max fax who are just surgeons at the end of the day.
The respiratory issues could be systemic aspect of Sjögren’s if you now have interstitial lung disease but otherwise they may just say it’s asthma. I had so many different symptoms in the run up to Christmas but the CTD doctor just shrugged and said it was coincidence and all are generally common ie GERD, CKD stage 2, fatty liver etc. He didn’t seem to know what to make of the chronic pancreatitis so queried thar I had this although GI doctor seems convinced.
I totally understand the psychological need for clarity - but if possible I wouldn’t worry about whether you have seronegative Sjögren’s or not unless you start having MS like symptoms or other signs of organ involvement in lungs or kidneys. Most rheumatologists pay no heed whatsoever to seronegative Sjögren’s anyway. It’s blood blood blood for them.
Meanwhile I am totally with you on the paradigm of false positives - it’s like medical nonsense verse! X
The lung issue's are not just asthma though. 4 years ago I thought the asthma had got out of control so GP sent me for an x-ray, result was COPD an umbrella diagnosis. Then last year had to have a HRCT scan of the thorax and a scan of the sinus as a Rheumy thought because of the vasculitis and some of the symptoms that maybe I had GPA. Lungs showed the COPD was in fact emphasema, broncheitasis and a bit of fibrosis. Sinus was clear apart from a small lump of "no importance". Bloods had returned to "negative" so told its not what he thought in a tone that made me feel as though it was me making a fuss I hadn't even heard of GPA until he put me through the mill.
Anyway that rheumy dismissed me and sent me to another one. Ha same rigmarole only this one said I had SS and sent me for more bloods even though I had just had them done and that they were negative and the lip biopsy. I told him he wouldn't find what he was looking for in the blood as apart from the false positives, high neutrophils, CRP and some strange goings on with the red cells. Again I had never ever heard of SS until being told about it.
The only positive outcome so far is they put me on Hyroxy and two of the different rashes seem to have gone along with the strange spasm's in the front part of the feet with the pain that sometime went with it. The petechei rashes still persist but I guess thats something I have to put up with.
As for the abdominal problems I have got use to them now and got fed up with going round and round in circles and constantly getting nowhere, although it was a strange relief being told I have gallstones and I now know one kidney looks healthy. A bit odd though that when he showed me the scans he didn't think to show the other kidney that has been giving me a bit of jip, just kept going on about the gallstones and the one kidney. I'm sure the doctor will or won't mention it, I say that with tongue in cheek as I've become allergic to doctor's.
I've got to the point of not caring about what I may or may not have and have all but given up with doctor's and only go now if the pain gets to the point that painkiller's don't work. I've always managed before I started going to the GPs and being sent on a wild goose chase for whatever strange disease. I had been in the mind if it aches rest it or take pain killers and if you're ill go to bed.
Oh well that turned into a rant, sorry but I've had enough of doctors and their crazy merry-go-rounds.
As I said I do understand. Many of us here have been on this same merry go round as you aptly describe it. I’d say roller coaster but hey ho. I can see how frustrating it is for you that the lip biopsy was negative but if you’re on Hydroxy already then they wouldn’t offer you anything else unless it went for other parts as could make lungs worse. Mycophenolate might be a good option though if they still decide it’s a connective tissue disease regardless of bloods. There are others here who seem to do well on both. Best of luck x
They put me on Hydroxy because of the lung diseases as being the better option. One department kept trying to get me to take Dapsone but that's not subtle for people with lung disease and apparently because of the lungs they have ruled out methotrexate as well.
As yet I haven't told GPs about the daft things like the bridge of the nose seems to have developed a little dent, or the silent migraine in one eye and that according to the options I have cataracts. So at some point in the future there will be yet another clinic to drag along to.
In the meantime I've been told I have to wait and see if the red blood cells go another 15 points higher for another department to spring into action with all their bells and whistles according to the GP.
Sometimes they can make you laugh with how they say things and I know like me they are just as frustrated.
I’m so sorry to hear of all your termoil with these different doctors - sometimes you feel like asking the question whether they’ve had any medical training, don’t you?
I came to this forum a few years back because I’ve been let down by the NHS for quite some time (don’t get me wrong I think it is a wonderful facility, the doctors and GP’s where I live just aren’t very... holistic or caring). I had started doing research on my own symptoms, reading different papers, articles, medical thesis and I’m basically ticking every box for lupus. That doesn’t mean I have lupus obviously but it looks quite evident. I came here for more info because I personally think the people who are suffering from said condition are usually the ones that have the most knowledge. I was told it can take upwards of 10 years to be diagnosed and although the NHS provides a “definitive” blood test, it can be a false negative. And actually even if it is negative, it doesn’t mean much as there are other ways of checking.
I had my first meeting with my Rheumy consultant in December. I’m a carer for my Mum who has Rheumatoid Arthritis so we go to the clinic often and everyone ranted and raved about this new consultant, so I was quite excited to hear his support. He was VILE. I intend to write an actual post on this so I won’t go into much detail, but he fought to the back teeth with me that there is a definitive blood test and it is negative so I don’t have Lupus, next! He wouldn’t even listen to the other symptoms I’ve been having (which fill an A4 sheet or more). Devestated. He also told me not to go onto forums because people here aren’t medically trained, but later told me forums can be a great source of knowledge and support?! 🤷🏻♀️ I’ve given up to be honest. Would like to crawl in a hole and disappear because it seems no one else is doing anything much!
I really hope the situation gets better for you and they can ease your gallstones somehow - I hear it’s not a nice thing to obtain, you poor dear.
Please let us know how you get on with things lovely 💖🌟
Fast running out of spoons (spoon theory for new peeps, check it out), but Boudica, I think all of us with long journey's to diagnosis have been where you are, and the dismissal merry go round does not make it any easier. I can't tell you what to do obviously, we all do what works for us, but never doubt your symptoms, we know our bodies, and we have to live in them, not doctors.
Peppytea, please do share your story, there is a lot of us having a rough ride with 'some doctors' here, very much to the detriment of our well being. Would just caution not to mention names here, both hospital and consultant. If you would like to chat off forum, happy to share experiences with you.
I am so sorry you had such a horrible hospital appointment, bedside manner, or for that matter, knowledge not this consultant's forte then? On the plus side Peppy, there are wonderful Lupus Consultants out there, truly, and if you are in the UK, you have a right to be referred to one. Take some time to get over the ordeal, and have a restful weekend. ((((Hugs))))))
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Dry eyes question and cancelled appointment :(
Today’s Appointment: meeting my consultant- Oral and maxillofacial surgeon 
Does the answers ever come?
Newly diagnosed - Struggling for answers
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