Hi, Am a newbie and maybe I don't really belong to the SS group. I was diagnosed by my Optometrist in November 2019 with Sjogren's Syndrome when I ended up on her doorstep for my annual checkup. She then did a Schermer's test which showed a severe Sjogren's reading - or words to that effect. Gave a letter to my GP who then said she couldn't help me any further after giving me a script for Systane lubricant eye drops (which worked like magic). She referred me to a Dr in the same practice who is sending me for more SS related blood tests, as well as thyroid tests.
Okay, I have been to a gazillion GPs, and specialists - including heart, neurology, physician - and have many, many different blood tests - who all have said I have a vivid imagination, and to go get a hobby!! I have had muscle pain from my feet to my fingertips, trembling, numbness, burning skin - all slowly worsening over the past 20-odd years, to my present state where I can barely lift my arms, walk with a stick at the best or a wheely walker, sometimes am relegated to a wheelchair. Have dry eyes, mouth, throat and ears as well as dry burning skin. My arms and legs are weak and painful, as well as trembling - woke this morning with what seemed like an epileptic attack, the trembling was so bad.
Have read a lot about SS - but, I do not have bone pain or joint pain, or usually no daytime fatigue (though sometimes due to a bad night's sleep). One physician after 1 blood test to see if 'pain markers' were present - and apparently there weren't, though on that particular day I could barely walk, and actually fell over in his rooms) - well in his wisdom, he told me I had Fibromyalgia. Maybe I do, but I believe more tests are needed to prove/disprove this. I believe because I have grey in my hair and have had this worsening problem for 20 years now, that the medical profession believe I can just continue to mold and decay in a corner somewhere, and please don't come back to worry them again - unless of course I have a normal everyday problem.
I am desperate to know what is the matter with me - besides ageing, and losing my sense of humour - oh, and slowly, ever so slowly, my mind.
Can anyone out there in the big wide world outside my room, help or advise me further? Thanks in advance.
Ask for second option I have muscle weakness positive Ro and ANA he says primary sjogrens I think mild dermatomyositis with overlap, I am just not prepared to wait until my muscles and lungs are damage . Go to dermatomyositis Facebook page, might give you lots of info. Good luck
I am very sorry to hear of your symptoms and the disregard you are getting from the doctors. I once got the same disregard for an odd cluster of symptoms that was very scary to me. I was sent to a psychiatrist because I was anxious (of course I was!) but after a radiologist friend heard my story, he asked to see my MRI scan, saw a "golf ball sized cyst" in the base of my skull, and wrote a letter to my doctor insisting I get a new scan. Scans were ordered and I got a call from the head of the radiology department on a weekend telling me I was"at the top of the priority list" and that he had 10 specialists trying to figure out what type of cyst it was (that was partially wrapped around my carotid artery). Fortunately, it was benign and successfully removed with 2 surgeries (twenty years ago) and all of my weird symptoms immediately went away and have not returned (knock on wood!). All this to say that I totally believe people when they mention odd symptoms and also totally understand the deep frustration, fear, and sense of feeling like one is "going crazy" because the world doesn't believe them. Doctors are taught that if they can't find the source of the problem and there are unusual symptoms, the person is likely anxious and a hypochondriac. (I bet there are many people in mental institutions whose doctors missed the true diagnosis.)
With regard to your own symptoms, I am not a doctor but think you are on the right track for ruling out Sjogren's Syndrome as it can sometimes include peripheral neuropathy which your burning sensations may possibly reflect. (I don't have that; my main symptom is burning, gritty, light sensitive eyes and associated reflexive eye closing). But as I am sure you know, there are lots of other nerve conditions that can cause your symptoms as well, such as M.S. or it can be caused by toxicity to something that affects nerve function, like mercury. You've probably had these ruled out by blood tests, but if your current neurologist doesn't come up with a diagnosis, I would look for a new one and not give up hope. Wishing you a quick, accurate diagnosis and full resolution of symptoms if at all possible!
Hi, to the people who responded to my gripe. It gets so scary and lonely when I am the only person who knows that I am in pain, or that my eyes, nose, mouth, throat and ears are just so itchy and sore that I fear that I am going demented. Not one of the very many in the medical profession have even examined me - touched me even. Besides taking my blood pressure, that is it. They have never even given me a muscle test, or felt my painful arm or leg muscles, or back. Any tests that have been done I have had to fight for, and some of these have taken many years. Won't go on, but I really am fed up. Have definitely lost faith in our medical profession.
I don't have many words of wisdom to help you, but I would like to recommend a group in the US that has really helped me. I also have weird complaints but no real diagnosis.
It seems if you're an "older" woman, you're either a bit neurotic or simply aging!
Check out smart patients.com It's a sjogren's site and has helped me so much. They're all extremely supportive and knowledgeable, and at least one member is a patient and a medical doctor. I'm in California, so I'm part of that big wide world you're reaching out to!
Good luck, 2WoombaGirl, and I hope the site helps you to understand this challenging disease.
Prayers are for Australia and the devastating wildfires. My son is a fireman and has had his share of wildfires in California.
I'm being investigated for Sjogren's and Small Fibre Neuropathy and have been told that I have Fibro. For various reasons I recently did some genetic and functional testing and have a COMT variation amongst others, which seems to be connected to Fibro. It apparently makes it hard to break down and get rid of adrenalin which can lead to a number of symptoms - trembling and numbness included. See beyondmthfr.com/a-genetic-c....
I would also check your B12 properly, which I'm sure you've had done, but MTHFR variants can make you struggle to use B12 in the cells so it can appear normal or even high but you can have symptoms of deficiency.
Worth watching Anne Louise Oaklander on YouTube - Small Fibers, Big Pain (Radcliffe Institute) as Small Fibre Neuropathy and Fibro and Sjogren's (and thyroid and other autoimmune conditions....) seem to have so many links. Best wishes.
So sorry to read of your getting nowhere with the doctors you have seen.
Firstly I wanted to say, you do not need to have bone or joint pain to have Sjögren’s. Some people have ‘only’ eye and mouth symptoms, others have joint involvement, others autonomic symptoms like peripheral neuropathy (PN), PoTS, GI tract failure, some have lung involvement and others renal/kidney damage etc. So there is no ‘have to have’ symptoms apart from probably the diminished lubricant for eyes and mouth.
For me my initial symptom was peripheral neuropathy and within several weeks came the nausea, balance issues, extreme fatigue which lasted four months, thousands of fasciculations each day etc etc.
At that time I was tested for SjS but it was all negative. After eight years I was tested again and everything was positive. Does that mean I didn’t have SjS when I was negative? No. I believe that I did have Sjögrens in those intervening years as nothing had changed with my symptoms. So a negative result does NOT preclude having the condition. To me it just means that they haven’t got sensitive enough tests yet to pick it up early.
For SjS specifically the blood tests are ANA’s, ENA’s (which includes the vital Anti Ro and Anti La’s), RF (rheumatoid factor), and perhaps CRP’s and ESR’s checking for inflammation. Chest xrays can be ordered to check for lung involvement. Various nerve function tests can be done but usually reveal nothing as peripheral neuropathy is often a small fibre neuropathy and it doesn’t show up on the traditional nerve fibre tests. There are some countries which do IENFD (intra epidermal nerve fibre densimetry) biopsys which are proof positive for PN. Australia doesn’t do it, sadly.
I'm so sorry to read all of this happening to you! There are many times we feel like hypochondriacs when there is so much happening.
Do you see a rheumatologist on a regular basis? See if you can find one who has a special interest in Sjogrens
I presume you are in Toowoomba from your pen name!? Can you maybe find someone in Brisbane or the Gold Coast? This definitely needs more help.
At the moment my eyes are particularly bad. I am using my usual eye drops etc but find that my pale sunglasses are needed inside if the lights are glary. Can't cope with fluoros! Many other symptoms bothering me at present too but you seem to be having a much worse time of it all. 😗
Hi there. Sorry you are struggling to be taken seriously by your doctors - it’s such a common problem affecting many of us. I’m in UK and it’s no different.
You might have seronegative Sjögren’s. This more often causes neurological involvement than the glandular type so is most often overlooked or misdiagnosed as Fibro or FND (functional neurological disorder - a nonsense diagnosis that is being increasingly made by neurologists).
Around if people with Sjögren’s 30% are seronegative and this usually can be confirmed by lip biopsy as mine was.
It means negative for Sjögren’s antibodies in the blood but positive by lip biopsy
Hi to all who have responded to my gripe the other day. This SS sure knows how to knock your legs out from under you. Just reading what some of you have to put up with has made me look anew at my problems. Went for some more blood tests (they must have more of my blood than I do!) today, results back when I go to new Dr next week. I added some tests to the form (don't tell anyone though) and they were all done - the Dr won't probably remember what he asked for - anyway I am tired of asking for specific tests to be done, and told that I dont need them - no reason just no So I added them to the form, and it will be interesting to see what the Dr says when he sees the additions - will probably pat himself on the back for being so involved. Keeping everything crossed that something will come of my escapade into the criminal side.
New symptoms keep arising every day - makes you want to jump out of bed early each morning to see what is wrong with you today. NOT!!
I’m psyhco because I can lose my cool / snap and especially when I go to the dentist . I have 0 tolerance when it comes to sheer ignorance and always about the $$$$ . Whatever I have left now and I’ve had to withdraw my super to
Be mortgage free, was meant to be for a new car and a few holidays - not the dentist or rheumatologists fees! My rheumatologist says I should be going to the gym and building up my upper strength because my left shoulder is the prob why I have pins and needles in both hands/fingers . I said to him Ummmm Gee that’s funny as this only started when my right hand swelled up and I have an old injury with my right shoulder that does t affect me. I don’t find his bed side manner to be empathetic but more like I’m a scientific challenge . He will not medicate me until
I have the biopsy. I don’t have private health insurance and do get some rebate back from
Medicare but I wonder wtf would happen if I was in the street homeless ? Prob just be left to die. Sometimes I feel like that’s the easiest solution. Do what I want - blow whatever $ I have left then just say bye bye 🤔🤔🤔. Or Might go to Thailand for a long holiday and have my teeth done there for a quarter of the price and to boot a great holiday !
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