The Australian Sjögren's Syndrome Association
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Do I have Sjogrens ??

Symptoms so many !! Multiple positive

ANA'S, severe paraesthesia (skin), extreme dry eyes, mouth, skin...Been going on now since January. Saw a Rheumatologist, blood work... She's uncertain ! Saw Neurologist...Had EME'S for Peripheral Neuropathy... results are negative ‼️Now back to Rheumatologist on 6/16...OMG, I am so miserable the symptoms become almost unbearable 😫 Hopefully will have more tests that will provide a DIAGNOSIS 😟 Comments anyone ??? Does this sound familiar ???

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Hi BettyBoop71345

Yes that sounds very familiar. I was diagnosed by my ENT via lip biopsy. What really got my attention was when I started to cry 😢 ...NO tears...just intense pain in my tear ducts sites. If you’ve not seen an ENT mucosal tissues are their specialty and should be easy for them to identify.

I hope you get diagnosed and relief soon you poor thing.

Gentle hugs 🤗 love 💕 and kisses 😘

😊🌸🦋🌿

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Thanks so much honey bug 💗 Me too 😳

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🤗💕😘. 😊🌸

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.......and another yes! It does sound familiar. Although my dry eyes and mouth came later I started with multiple symptoms including paraesthesias. It was a confusing time and I'm sure my GP thought I was nuts.

Same as you I had EMG's done by a neurologist and nothing showed up. Small fibre neuropathy (SFN) doesn't show up on EMG's, so it doesn't mean you don't have peripheral neuropathy. The only test to really reveal SFN is an Intra Epidermal Nerve Fibre Densimetry or in other words a biospy of the intraepidermal nerve fibres in your legs. However to my knowledge it is not done in Australia. Several years ago I was in correspondence with a neurologist in Sydney who was wonderful and we had a lot of dialogue about the benefits of this test. She really wanted it to be endorsed by the TGA.

Are your ANA's convincingly high like 1:640 or above? Have they done Anti SSA-Ro and Anti SSB-La's? Mine did not show as positive until eight years after all my symptoms started. Once these tests were positive I was referred to a Rheumatologist who didn't just say I had Fibromyalgia - like a previous Rheumy. I don't believe I ever had Fibromyalgia. I had Sjögren Syndrome all along!

In those eight years Betty before I had a diagnosis, I had treatment for each individual 'symptom'. At least it made life bearable.

There seems to be only two ways to diagnose this condition. Blood tests ANA's and ENA's and lip biopsy, as honeybug has said. From what I've heard, some doctors will stick their necks out and treat AS IF you have Sjögrens when the symptoms are convincing despite seronegative status.....but they are few and far between.

Be assured that if you need some understanding we are here and have been through the early days of confusion, pain and multiple symptoms which you are experiencing.

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Thank you so much for your message 👍🏻 Remodeling this weekend...Will reply in detail asap !!

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Megansheart very well said my dear 👏👏👏👍🏻👍🏻👍🏻

🌸🌸🌸🌹🌹🌹🌸🌸🌸

😊🌸 🤗💕😘

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Yes all too familiar, I am 62 yrs of age. I saw a Reumatologist 2 years ago for multiple issues including muscle and bone pain. He confirmed that I had Sjorgens but that it was only dry eye and dry skin related. One thing he did do was tell me about this support group and I thank him for that. It appears that this condition is relatively new?? and that not enough is known about it. I have the same weird skin tingling and crawling feeling in my lower limbs, woke up one morning and thought I had no legs at all. Still get that feeling when I lay down sometimes, but just reassure myself that I do have legs and that by just moving them I can reassure myself mentally. The dry eyes is a huge problem even at night time after using cream and drops in my eyes throughout the day ( and night) I can feel them drying as soon as I lay back down again. I am having some success with eye drops called OPTIMEL, they contain Manuka Honey and keep the eyes hydrated for a long time, they sting at first but if you just keep the eyes closed for 5 seconds this subsides. They are around $25 but invaluable I have found. They are antibacterial as well so no more crusty eye lashes either. At night time I find it strange with the hydration - when laying down I can feel everything drying up , throat, nose, eyes. I was diagnosed with Periphial Neuropathy ( last year ) after having a test at the Nerve Study Clinic. I was having symptoms of weakness in my muscles and also burning pains on top and at the sides of my feet. Whatever it is has really sunk in now and my feet feel think and painful during the day and at night. The pain is subsiding a little now though with stretches I am doing. I do not take any medication for Sjrogens only for my Osteoarthritis, and I take an anti inflammatory and also the Turmeric support Curcimax. I do not take pain killers I keep myself busy and try not to think about what the future holdswith this condition. The latest thing that has happened is that my white blood cell count went down to 0.97 which meant I had no immune system and the only symptom I had was just tiredness really. Blood tests every day and it came back up again so not sure what that was about.............. Anyway I hope you get some reassurance from this support group. I am not sure about any others but I have trouble concentrating - so not sure if the brain is drying up too............. we will soon find out.

I am not happy about the lady type intimate issues with the dryness either, very painful attempting to be intimate when things are as dry as sandpaper even with lubrication.

Anyway take care. Good luck and stay in touch.

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Ah, you do seem to be having a really rough go😟 I do not have peripheral neuropathy ! Tests were negative...So only pain is mostly in my hands. The dry eyes are dreadful...My skin always feels Prickly, seems to be moving downward on me. Will add more a bit later, moving furniture this weekend 😳Thanks for your message 👍🏻

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Ok best wishes happy moving. 🐝

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Morning (here) to you 🌅 Had a dreadful day yesterday 😫 Parathesia was so intense ‼️ Will not see R until 6/16..

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I think from what you say you DO have peripheral neuropathy but it cannot be picked up on an EMG. In my earlier message I elaborate on this a bit more.

For some more information I quote the following from a neuropathy centre website: "Since the EMG/NCV only picks up large fibre dysfunction, one can certainly have a negative EMG/NCV and still have peripheral neuropathy."

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You mention crawly feeling, I frequently feel like something is hanging off my skirt/shorts and brush it away but nothing there, is that a sjogrens symptom. I often ask my husband or kids if a thread is hanging as that is what it feels like.

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Sounds very familiar. You seem to be travelling down the same path as myself, diagnosed with sjogrens in UK in 2016 while visiting my parents but had dry eyes, mouth, throat nose for over a year ( thought it an age thing) told to go back to Australia and see optometrist and dentist ( top of tooth snapped clean off in UK) both said consistent with sjogrens but reumatologist said only sicca because bloods negative ( didnt want to know about fuzzy feet and hand or electric shocks in legs) had 3 nerve studies, wonder I have any blood left that many tests repeated and two mri's and showed nothing. didn't do lip biopsy as my gp said everything hangs on who does the test and how and has one patient who's lip is still numb two years later and another who drools. My throat feels like it is velcroed together and my tongue I can feel literally hydrating when I drink so more than sicca,can put eye drops in every 10 mins to every hour ( night worse) my gp referred me back to rheumatologist who kept upping anti depressants for fibro and ME and referring me back to gp so waiting on public appointment in June but am now being investigated for myasthenia gravis or Lambert eatons and I too do not think I have fibro. I have seen 3 neurologists who all say depression causing all symptoms including frequent nose bleeds from dry nose ? but I told them I am not depressed just frustrated and angry they all reach for easy diagnosis instead of looking at symptoms as a whole and if anything symptoms causing depression. I was fine until had a fall at a hospital where I worked in 2015 then everything down hill. I have a good gp but everything an uphill battle

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Oooooh, it makes me so mad, so fuming when doctors impute depression when we KNOW that something physiological is going on. At those times my vindictive self comes out and I wish something undiagnosable would happen to them but of course because they are neurologists or rheumatologists or endocrinologists no other medical specialist would treat them the way that we are treated and they would get a speedy diagnosis through thick or thin.

Have any of you ever written to a specialist you have seen who has said these things to you? I have written to three of mine a thousand times in my head but never actually done it yet. One day I will!

Peace to you sister! 💐

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Megansheart 🌸🦋🌿

You took the words right out of my mouth!!!! I totally agree!!!

This is why I quit going to doctors because I spent a fortune only to get that it’s all in your head or you’re depressed answer.

Wouldn’t it ironic if those naysayers developed some of the conditions they adamantly denied existed???? If we could only see the look on their faces then...😳

🤗🌸 🤗💕😘

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One of the wisest physicians I ever saw said that there is so much they do not know yet. He admitted that in ten years time (from when I saw him) that the symptoms I was presenting with would be much more clearly definable and that the knowledge base of autoimmune conditions (for that is what he felt I had) would be leap years ahead.

Even though his predictions may not be have fully come to pass yet, his attitude was so reassuring that it was NOT all in my head. My lack of a diagnosis was because of their knowledge inadequacies. 🔬

We need more of these wise doctors!

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I agree. It takes a very humble doctor to admit he doesn’t have all the answers and be honest with responses instead of saying it’s in our heads or doesn’t exist. I have a great primary doctor in the States who is like this. Thank you Megansheart for this reply.

Hope you are as well as you can be. Take care dear.

😊🌸🤗💕😘

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Parathesia dreadful ‼️ Crawling sensations face,scalp,neck,arms 😢 My hands hurt something awful 😫 Don't have an appointment with Rheumatologist until 6/16 😳Oh dear God...My toes are ice cold...What to do, what to do ?????

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Bettyboop, have you been put on any medications yet? It sounds like you may need to start Pregabalin (Lyrica) or Gabapentin (Neurontin) for the neuropathy and parathaesias. Would your GP or primary doctor be able to prescribe that for you?

In the years that I didn't have a definite diagnosis for anything I was very blessed that I was able to see doctors who prescribed what was helpful for the symptoms. In that way it really helped my qol (quality of life). So for instance for postural tachycardia I was prescribed Propranolol. For paralysed stomach I was prescribed Domperidone. For neuropathy - Lyrica. For muscle and joint pain, Tramadol etc etc. All of these symptoms can be associated with Sjögren's Syndrome.

I hate having to be on all these medications but after ten years I am functioning reasonably well.

Fortunately three years ago I got a definite diagnosis for Sjögrens when my bloods finally became positive for ANA's and SSA - Anti Ro's. That meant that the Rheumatologist I am seeing has started me on some more Sjögrens related meds.

I hope you have a much better visit with the Rheumatologist on the 16th June (I think that is the date. I don't understand your back to front dates 😉🤣).

In the meantime take one day at a time. You may also need to take some household painkiller - like Paracetamol (Panadol) or whatever you call it several times a day if things become unbearable.

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Will try to get in with PCP, ASAP ! Have run out of Gabapentin..which seems to help a bit !! 300 mg. twice daily. R nor N would write new RX for me !! Storming here this early AM ! Tropical storm in the Gulf of Mexico..I live in Atlanta, GA. 6:15 AM here currently. Must wait until 8 !! Symptoms not as bad this morning ! Thank you for your understanding 💗

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I spent that much in 2016 & 17 I hit the threshold. I have also thought about writing to neurologist especially the last one I saw at Brisbane Mater hospital who was totally dismissive, waited 52 mins over my appointment time ( referral to public system) only to be asked my symptoms by a 20 something neurologist who had his nose touching his notes as he was writing, then when I had finished he said " I see your a patient of Dr Blum" ( private) neurologist, I think you should go back and see him as I have nothing to add. I said I have seen him three times for a total of 17 mins and I am not getting anywhere. I'd mentioned I was under PA Hospital chronic pain clinic for fibro, chronic fatigue/ME and he said why and had I seen a psychiatrist, I knew then I was wasting my time.

He made a public appointment for me with Dr Blum which I cancelled making sure i told the receptionist why.

I have worked with Dr's for over twenty five years and know he wouldn't have liked stepping on a colleagues toes so to speak but they also have a duty of care to patients and I am really fed up of hearing the D word, why is it they think they know our bodies more than we do ?

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Persiankiwi☔️💦🌈💦☔️

I’m so sorry you have had this experience too.

I had to stop seeing my specialist in rehab due to my mom’s critical health crises which took me six years to get her diagnosed with the worst of her problems Alzheimer’s. I cried for 4 months day and night. By then my specialist wouldn’t take me back due his cut off of 3 years without being seen. Sooo l was referred to a colleague that never look at me and did very little for me...so indifferent l may as well as not been there at all.

In 2013 l actually saw a neurologist who was so aggressive...told me I crazy and came within inches of hitting my face with my chart. I took that vial treatment and endured it all until the end of the appointment and got a referral to the top specialist in the Neuro field at the University of Michigan USA. I was diagnosed after 10 months DNA testing and conferring with other specialists as 1of 3 worldwide with the rarest form of Inherited Erythromelalgia. I have made up my mind since this experience that ending an appt abruptly isn’t good and to stay and see if good will come out of it.

But oh how l haaate being dehumanized by any doctor whatever their reason is!!!’

Please take care dear and I wish you better experiences in the future. 🌸🌿🦋

😊🌿 🤗💕😘

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Dr’s have a lot to answer for and don’t know everything. Takes a good one to admit it but there are a few.

You take care of yourself too. 🌸💐🦋🦄 🌹

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😊🌸🤗💕😘

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Saw Rheumatologist today....She stated I do not have Sjogrens !!! Suggested I see a psychiatrist...sent me to ER 😫

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I am in Scotland, UK. I was misdiagnosed with RA to begin with but when the small fibre neuropathy (SFN) continued to get worse (as Megansheart said it doesn’t usually show up in EMG etc) I relocated and pushed hard for for testing for MS - which showed negative but did show that I had a systemic process occurring and white matter on my brain - associated with Sjögren’s.

Then my ANA showed positive at 1:320 with nucleolar pattern usually associated with Scleroderma. No ENA ever but raised IgG and IgA and Creatinine and high PV/ESR and CRP. On strength of this and my SFN I was offered a lip biopsy by referral from the new rheum to an oral medicine specialist in dental hospital. I went ahead and had it with misgivings about it not showing anything - but to everyone’s surprise it came back 100% positive! Never had a problem with my lip apart from for a few weeks it felt like a hair was stuck on it. But I have such extensive neuropathy, including burning lips and gums, that I could put up with that or numbness for sake of this clarity!

Some doctors (GPs and neurologist ) try to stick the functional/ hypochondriac label on me still but I stand my ground because of high inflammation in blood and spinal fluid and the white matter on my brain. I don’t take any of the functional nonsense from anyone now. I suggest you get tough and remind them that Sjögren’s can be seronegative and usually takes years to be diagnosed so you don’t accept this is of the mind. You really need clarity for peace of mind, so find someone whom you trust to do a lip biopsy.

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My Rheumatologist ordered the biopsy, also appt. with opthalmologist !! Additional blood work for Sjogrens...🤞🏻

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Sorry you've had to go through all of this. There is obviously a gap in the general knowledge of what I think are interrelated auto-immune/inflammatory diseases. Here's a good book about inflammation that posits each of us has unique weaknesses in our systems that react first when we carry more stress than our bodies can handle:

The Autoimmune Fix: How to Stop the Hidden Autoimmune Damage that keeps you sick ...

by Tom O'Bryan

Just a couple of tricks I've found to address symptoms no matter if or what diagnoses.

I take a homeopathic remedy called Natrum phos which is just Sodium Phosphate that has greatly reduced my mouth and lip sores. It’s available at 1-800homeopathy.com.

The sores and eczema, I think are related to what I eat. So I've eliminated many things from my diet that cause inflammation, eczema and digestive upset. This has helped me feel a lot better. For me those things are all grains including non-gluten ones and high acid foods like tomatoes and citrus fruits. If I'm generally feeling good, I can cheat a bit and have a taco or gluten-free cookie. Try a paleo or elimination diet in which you eat only few bland foods and gradually add one food every so often to see how you feel or react.

We have a couple of doctors who are dry-eye specialists. I recommend finding one. Something they suggested was taking fish oil tablets which made a big improvement in my dry eye. Also, Theratears has an eyelid wash product which he recommended and helps me.

In addition, a Naturopath suggested increasing my Vitamin D intake to get up to a normal or above normal level. That and Testosterone cream has reduced my drowsiness and increased my strength.

And finally I found an essential oil for sinus congestion that helps my sinuses to drain so I can avoid sinus drugs. Mostly I use only saline nose spray which is cheaper and can be used regularly which I recommend. Hope something helps.

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Thank you so much ! I'm very depressed right now...Buried my grandson on Thursday 💔 Will bury my sister this Friday 😢Just really overwhelmed right now... Will be back in touch soon 👍🏻

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How awful for you - no wonder you are overwhelmed. Hugs, Twitchy

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Had the biopsy performed today !! Wow, very painful after the fact 😣

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