Not Sjogrens
Posted , 12 users are following.
Thanks for allowing me to follow and read some of your situations. I really thought after reading what people were talking about here that the doctors were going to find out what was wrong with me. The dry nose for me is the worst nuisance. I have been dealing with the dry eyes since the 90's and have been thirsty all the time. I had not equated that to dry mouth until it became so bad that my tongue is like sandpaper, I get sores all the time etc you all know. I have been dealing with horrible pain throughout my body since 2006. I was so excited for someone to finally look for what is wrong. I am a veteran and the VA really did not want to find out. My blood work was negative. My symptoms I can deal with... its frustrating but most of all I had my hopes up and its kinda...
well I just want to cry...
not cause I;m hurting or my stomach kills me every day especially after I eat. I am just so disappointed. I don't understand... I get cut I don't heal but I'm not diabetic, my stomach hurts all the time, you cannot hug me, I have to be very careful of what cloths I ware and what chairs I sit in because it will feel like needles going into me body. I get electrical shocks going out my toes and know I am starting to shake. There are so many symptoms. I have finally been diagnosed with gastroparesis and I guess at least that is a start. Maybe I just have a lot of little things wrong.
Thank you for letting me vent I will soon be dis-enrolling from this site as I do not have Sjogren's I do pray for each of you I know that you all are going through your trials and tribulations. May God give you peace and strength to endure.
0 likes, 33 replies
dryguy Venita2018
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margaret22116 dryguy
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I could not agree more with what you say here. This is important for anyone going through these symptoms. I have Behcet's (very similar to Sjogren's) I went undiagnosed until my late 30's. It is a struggle but worth it in the end for good treatment. I am currently in remission and thankful every day for the great care I got after diagnosis.
dryguy margaret22116
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Tumtum1963 Venita2018
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I’m so sorry you are in this awful pain with no answers Venita. Even though my form of Sjögren’s is horrendous I thank my lucky stars for having a name to curse for my symptoms. I think there’s nothing worse than uncertainty. Just a thought - has Behcets ever come up with you? It’s very rare and it’s ANCA negative I believe so you need a Vasculitis rheumatologist to diagnose but the sores and similarity to Sjögren’s could point that way. My Sjögren’s is seronegative/ lip biopsy positive. The disease is often a very different presentation for those who are diagnosed by lip biopsy rather than blood. It is just as potentially serious. But very wrongly - we don’t meet the criteria for clinical trials unless it’s in our blood. So those who are part of SS trials often have a much more glandular disease.
mce43511 Venita2018
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Fatigue, joint pain, dry mouth, dry eyes.
He referred me to rheumatology even with negative bloodwork and they did an early sjo test that came back positive.
The Dr was willing to treat even if it came back negative so maybe you can do the same?
Venita2018 mce43511
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What is an early sjo test? I was sent to rheumatologist and my blood work is negative so she did a cat scan of my neck to see if my glands were swollen. They were not... but she did find a nodule on my thyroid. I am trying to get some tools together to present to her when I see her next so she won't send me away. I just do not know what to ask her to check for. She put me on some kind of porcupine medicine. I really cannot remember the spelling.
lily65668 Venita2018
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Venita2018
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celeste07997 Venita2018
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Hi Venita
I am going through the same thing as you in being turned away by the rheum due to negative bloodwork. Let me say that the medical community knows very little about autoimmune conditions - very, very little. Lots of people have SS but can’t get a diagnosis, because diagnoses are based on what they currently think about SS, which will be updated in time. Add to this that SS is a particularly rare one. It does sound like you have SS.
In a way, I wouldn’t worry too much that they can’t diagnose you, as a diagnosis won’t lead to an effective treatment - unfortunately that doesn’t exist. I think it’s more important to trial lifestyle changes. Autoimmune conditions usually occur from a combination of factors - typically instigated by a real infection. You later may take on another substance that mimics the molecular structure of that real infection, leading to an attack on that other structure. For example, many cases of rheumatoid arthritis are caused by the body attacking the joints because its moleculsr structure is very similar to an organism that repeatedly causes bladder infections in that person - usually from eating meat (the bugs crawl into the bladder from the rectum). People often cure themselves by going on a plant-based diet. Another example is with autoimmune issues and gluten intolerance, where gluten has a very similar molecular structure to an existing or past infection. So I think SS is probably similar, but the combination of pathogens is different.
What I’m saying is that lifestyle factors can, at least in many cases, greatly change the prognosis of autoimmune diseases. I haven’t yet cleared up my lifestyle but I am in the process of doing so. I’m almost scared to try, in case it doesn’t work. But I have hope. 😊
Best wishes to you. I hope you manage to get on top of this one day. x
Venita2018 celeste07997
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Thank you, I have been trying for a while to adjust my foods. Gluten free did not seem to matter, some food I just cannot tolerate any longer. I love eggs, rice, and honey but cheerios but all of these foods now make me scream with pain. I cannot eat them. Since moving to the retirement community I have learned that i cannot tolerate barley either. I understand about food it can sure make a difference my stomach hurts all the time, however if I just eat frosted flakes and begals I feel better but a person cannot live on frosted flakes. 😁 I am going to be ok either way I am better now. I was just so disappointed when my doctor told me. Nothing worse than all these years someone telling you they know what is wrong and then you are told "Oh well". I thought this would mean an end to all the pain but I see it would not.what does it matter of a name if the pain continues. The VA is already trying to control my symptoms. I guess I already have what I need. God is in charge. I am ok. Thank you so much. I am going to continue to work on food changes I pray you find your menu as well. Thank you again for the kind words God Bless. 💖
chris08587 Venita2018
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Hi Venita, I’m really sorry you are still feeling so badly. I hope you stay on the site if you feel it helps you. I think there are a lot of people on this site that know a lot. I’ve been told that it takes an average of about 3 years to be diagnosed with Sjögrens. Clearly something is wrong with you.?? And doesn’t always show up initially in blood work. But I do hope you don’t have it, of course and will soon feel better. Don’t give up.🖐
Venita2018 chris08587
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Thank you so much for your kind words I will be ok. I needed tome to adjust to being told my blood work was negative. I am better now well in my head any way. The VA have been treating my symptoms for a while. Even though I have bad days it looks like I no different than those who have been diagnosed. I guess I will be fine I really do not need a name I will just keep on. God bless and I pray that your days ahead will be peaceful ones. 💖
lily65668 Venita2018
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I'm glad you're able to be positive about all this, Venita. Autoimmune conditions certainly aren't imaginary, but attitude is all-important in their management, and can make a real difference.
I'm sorry you had such a bad time in the VA hospital (as mentioned in your first post on these boards). I'm British-Belgian, but we hear about the poor conditions in some of these hospitals over here. I recently read an article written in 2014, which described conditions that weren't a whole lot better than those portrayed in Born on the 4th of July.
I'm totally with you on not being bothered as to whether I get a diagnosis or not. I suspect these autoimmune conditions are as confusing for the doctors as they are for us, the patients. I've had my symptoms for 23 years now, finally got a provisional diagnosis (on blood results) from a rheumatologist 13 years ago, but I refused a lip biopsy so it was never confirmed. I then got a firm diagnosis from an ophthalmologist on the basis of a zero Schirmer's test three months ago, only to be told last week by another ophthalmologist in the same department that I don't have a zero Schirmer's, and you can't use this test to diagnose Sjogren's anyway! So now we're off on the blood tests again, possibly to be followed this time round by a lip biopsy. Or possibly not... Either way, I just want someone to find a way to manage my eye condition - whatever name they stick on it - so I can safely get the cataract ops I badly need.
I hope things start looking up for you now. Do stay in touch with us all if you feel like it.
dryguy chris08587
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The average official time to diagnosis is 8 years and a large % are never diagnosed due to the lack of knowledge and the inadequate diagnostics used
For many 90% of men and 50% of women it never shows in "bloodwork using the current tests
dryguy lily65668
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I repeat my earlier ost as people often overlook early posts .."THERE IS NO DIAGNOSTIC THAT IS ACCURATE OR SPECIFIC TO SS. 50% OF WOMEN AND 90% OF MEN ARE SERO -VE 10-20% ARE LIP BIOPSY -VE. MEDICS ARE BRAIN DEAD RETARDS WHO ARE 30 YEARS OUT OF DATE . How do I know I have sero -ve SS am a PhD medical science grad and have read every research paper ever written on SS . THERE IS NO TEST FOR SS the only way to diagnose is clinically ! Plus unless it's to get insurance payouts a diagnosis is irrelevant as there is no treatment for SS that is effective ..... Best to do your own research and find what work for you. Zero schirers is again irrelevant as anything below 5mm is classed as part of SS "diagnosis" your consultant is wrong sorry . I hope you get treated well as a patient and not messed around and talked down to ... stand up for your experiences and don't let dumb out of date medics make you feel bad!
chris08587 dryguy
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lily65668 chris08587
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dryguy chris08587
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ANA has no direct link to SS, most with SS do not have elevated ANA . Also ANA goes up and down like a yo yo . Many with RA and SLE do not have elevated ANA.
SSB /La is often associated with SLE .
%0% of women with clincal SS do not test +ve for SSA/SSB Ro/La and 90% of men do not test =ve for them at any time in their illness. They are clumsy non specific markers.
Yes bloods are very inaccurate and unspecific for SS especially bit also RA and SLE and CFS and ME. This is well know and documented by aware intelligent researchers BUT medics are out f date they do not read research and rely on dogma and usually out of date dogma. I have met and argued with the 5 leading clinical experts on SS in the UK and blown them out of the water and in the end they cannot argue back as they do not have the evidence to support their stance whereas I present the key research papers.
I have a superb opth consult and she gets many patients with extreme dry eye on the verge of blindness yet their rheums say they don't have SS indeed they don't have anything according to the rheums!!! She say bulls*** and treats based on clinical signs not bloods!
Remember when Sjogren 1st described the condition over 80 years ago there were no bloods he solely used clinical diagnosis.
Bloods are a modern very weak system especially for AI but indeed are often inaccurate for a range of medical conditions.
I have fought hard and long for 5 years the ignorance about SS and run several self help groups with over 5000 members also a charity rasing funds for SS research but we only give money to universities and institutes that in our opinion are doing usefu research ... much research is about generating paper for funding and getting PhDs
Even the so called gold standard of lip biopsy has a 20 % failure rate .
So in the end there is no diagnostic for SS. Sle is marginally better but again many do not fit the dogma ditto RA .
Hence my comment in the end we have to research ourselves especially as there is not 1 single treatment designed for SS and not 1 that is effective for the sicca symptoms at all and often not effective at all. Some feel reduced fatigue with some of the crude DMARDS .
So we tend to experiment with LDN , TCM herbs that have some clinical evidence to support their efficacy. Hope this helps .. I do get very tired of going over the same old ground and NEVER seeing any progress in SS diagnosis and even less in terms of therapies
Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.
dryguy chris08587
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I have tried to reply but it is being moderated ... don't be surprised if it gets blocked as dogma hates being challenged ... sorry best I can do
shaq26875 chris08587
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3 years ago I was diagnosed with SS after a blood test yet the rheumatologist still wanted a lip biopsy to confirm !! I procrastinated but started the hydroxychloroquine and steroids prescribed. and after 2 months my dry mouth got better as did my swollen knuckles...at a follow up meeting I asked if I did a lip biopsy now (with normal saliva flow) would it still show +ve for SS and he said 'It might not' (I thought it was the Gold Test) needless to say I did not get 1 done. 2 yrs later after I had stopped taking all meds for SS it returned with a vengeance I returned to rheum and told me the pain I had in shoulders ,biceps, elbows wrists fingers was due to a trapped nerve ..so prescribed hydroxchloro and Lyrica , apart from knocking me out for a few hrs Lyrica had no real effect on the pain. Next visit he said 'Fibromyalgia ...gave my different meds ..... I didn't take that as I wasn't convinced it was Fibro . Symptons didn't get better, went to different rheum ...blood +ve for SSa and SSb with no other markers for other autoimmune...this rheum did not even suggest Fibro ...symptoms subsided for a time and returned...so back on steroids. (intend to taper off myself) plus anti immune drug...as I got bronchitis and asymptomatic UTI...stopped taking anti immune drug... after 7 days of heavy antibiotics plus steroid inhalers etc...I seemed better...but now 5 days after all drugs stopped for bronchitis ..cough is back with phlegm so could SS also be affecting my lungs? A question for the pulmonlogist ? or rheumatologist ? ...(the routine last Blood test 2 weeks ago showed all blood cell counts normal and ESR within the limit...have been on hydrocychlor + steroids yet urine sample showed pus between 6 to 7x higher than acceptable limit...
?the Drs seem to be taking pot shots at what the symptoms could be a sign off..
?I have follow up appointments with gastro man and pulmonologist tomorrow ...wonder if they will say..all to related to SS or 'Everything is fine' or ' come back in 1 weeks time '
?even the rheums seem to be limited in their knowledge of SS and how if affects the whole body or just specific areas
(in my case at least) I have seen a gastroenterologist, a pulmonologist , a rheumatologist , and had blood tests, chest xray. abdominal ultrasound, gastroscopy, stool , urine tests , phlegm and urine cultures , biopsies during gastroscopy ....all within 2 weeks...
?Next week I see the rheumatologist and ophthalmologist ...again follow up visits...Sorry about such a long post I didn't mean to rant on and on
chris08587 dryguy
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dryguy shaq26875
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So sorry to hear your story .. it is identical to many thousands on my groups
Rheums are spectacularly useless as they are the weakest of the many "disciplines" academically and training is very poor in rheumatology.... They do not understand immunology! Of the 4 main AI diseases Sjogrens is the least understood by anyone ie = zero understanding.
It is systemic eg affects all organs and tissues - many medics fail to know understand or test for this. It affects nerves and often mimics MS in MRI scans, affects the bladder = IC affects the kidneys = nephritis, affects the lungs = interstitial pneumonitis, affects the whole gastro intestinal system = many issues, affects the nose eyes mouth saliva , affects the skin, cause POTS, causes autonomic dysregulation ad many more issues ... everyone is affected differently but most symptoms are "hidden" and nt tested for ever
lily65668 dryguy
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I'm inclined to agree over the divisions and lack of knowledge among specialists, and not just rheumatologists.
The second of the three ophthalmologists I've seen this year (the one who diagnosed SS on the basis of an allegedly zero Schirmer's, then told me there was nothing anyone could do about it and I could never get my cataracts done) refused even to accept that SS could affect the salivary glands, let alone peripheral nerves or anything like that! He reckoned it was purely an eye disease, though was prepared to concede that in around 0.5% of cases it might co-exist with RA. All of which begs the question, of course, of why it's referred to as a syndrome in the first place if it only has one symptom. (Not that I considered it was worth raising this with him.) And he's the head of the entire ophthalmology service of a respected hospital group in Brussels.
His much younger eye-surface specialist colleague, who I saw last week, seemed more knowledgeable and open to dialogue, so I'm hoping I'll get further with her. I have to see her again in three months' time (having basically been told to just go away and go blind by her boss!) and will await her take on my blood results with interest. Though I won't hold my breath...
I can't help wondering whether perhaps the younger doctors coming up now might have a better grasp of AI conditions, and maybe more interest in them too.
dryguy lily65668
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One can but hope ..
But going blind isn't the only option ... Hylo forte lubrucant , cyclosporin ointment and restatis can all help with eyes . also autologous serum eye drops. My eyes have improved with all of these plus LDN but nothung helps my saliva and lungs ...
lily65668 dryguy
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No indeed it isn't, or at least I hope not... which was why I refused to accept that option and pressed for yet another opinion.
The latest ophthalmologist ordered a whole raft of tests for inflammation markers, the results of which haven't arrived yet. I realise of course that these may well turn out to be inconclusive, as they were the last time they were done in 2005. On that occasion the rheumatologist who ordered the tests said they were suggestive of SS, but not definitive, and ordered a lip biopsy, which I refused.
The ophthalmologist said that on the basis of the tests and any progress from the new treatments she's prescribed (Systane drops to replace Thealoz, stopping all overnight gels and creams, and rigorous daily use of a heated eye mask) she'll look at whether it would be advisable to go for lip biopsy... which I also realise might be negative or inconclusive, of course.
Given that she discovered I have severe conjunctival scarring (reason as yet unknown) which has completely blocked all the oil ducts in one eye and partially in the other, she mentioned that there could even be a question of surgery to unblock the ducts in the more severely affected eye.
On the basis of another Schirmer test, together with careful examination of my eyes, she disagreed with her boss about his zero tears diagnosis. She said I still have some tear production, albeit reduced, but it's the total lack of oil production in the left eye that's preventing the light tear film from evaporating as soon as it's secreted. She's as yet uncertain as to whether or not the lack of oil is a consequence of SS. After all, I'm well on in my 70s, so the reduced tear production could turn out just to be age-related.
For the moment, all hinges on the outcome of the bloodwork and the possible lip biopsy which may follow. I'm well aware that both could turn out to be a) negative, b) inconclusive or c) totally meaningless anyway, but now I've found a specialist who's open to dialogue and seems able to think out of the box, I feel I may need to be more open on my side to further conventional testing. Quite apart from anything else, the results could contribute (or not) to my being eligible for insurance cover for any expensive treatments in the future.
shaq26875 dryguy
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I have read and heard that food is the culprit behind AI and by removing gluten , dairy etc etc your AI issues disappear. I did ask the rheum at the last visit and she said. " It helps some people with joint pain but SS has to be treated to stop progression and damage to tendons " i.e going gluten free etc only just helps with symptoms but you still need meds" (hydroxychloroquin etc to control SS(this was before I visited the gastro and had endoscopy + biopsies taken )
?What is your take on this ? food related or meds to control ? At this stage I don't know what to believe
?