My story, Sjogrens?

Hi all and I hope you are all having good days today.

I’m new here but have been reading your posts with much interest and I’m so sorry at the time some of you have waited for a diagnosis and some of the scary things you have had to go through.

It is somehow comforting though to hear that others share your strange and scary symptoms and Twitchytoes, do not feel so alone with your version of Sjogrens. I am with you symptom by symptom.

My story starts about 9 years ago with dizzy spells, palpitations and terrible reflux. I thought nothing of it till I started having the most odd sensations, numb spots, blurred vision and little facial rashes.

It was put down to peri menopause for a while but eventually I was referred to a Rheumatologist as I had joint pain, dryness and a slightly elevated RF. By the time my appointment came round though my RF was through the roof and I had salivary gland stones.

After seeing a useless Rheumy at my local hospital, I was sent for a second opinion to the lovely Dr D’Cruz at the lupus unit who immediately diagnosed me with Sjogrens. High RF, low complement and borderline/negative ANA. He said it was fairly mild and started me on Hydroxy.

Things settled down a little and for the next year or two, things were up and down but bearable. New symptoms would come and go, some of them quite odd and some very scary, but they would all go and it would all be put down to the Sjogrens. That was until I was one day told it was not the Sjogrens and I was un diagnosed. No one had any idea what was wrong with me so naturally panic set in.

I was told I should see a Neurologist immediately. The Neurologist said there was nothing wrong neurologically and I should find another Rheumatologist and this is how things went for many years. In all, I saw 5 Neurologists and was tested for MS, CNS vasculitis, Temporal arteritis, POTS and a host of other things. All negative and normal. I was also told by several doctors that it was all in my head and was referred to therapists. This was now stuck on my records so every doctor I saw instantly saw this and didn’t take me seriously. I was labelled “stressed” for such a long time and always asked “When did you last see the Pyschiatrist?”. It was all made so much worse by the fact that I was now seeing a Urologist, a Gastro doc, Opthalmologist, ENT and Max fax and I admit I was scared. In all fairness I probably did look like a hypochondriac or an overly stressed worrier. One doctor said I was anxious as I was hyperventilating. I probably was but it was because I couldn’t breath properly as my chest hurt.

Over the years I’d had scans on every part of my body, Cardiac investigations, bladder scans, lumbar punctures, liver scans, VEP’s, NCS etc yet nothing showed up anywhere. Even my lip biopsy was inconclusive.

Eventually I found a Neurologist who took me seriously and instantly said it was Sjogrens. He’s an MS specialist and said he sees this type of Sjogrens all the time. He also complained that most Rheumatologists work within such a small window and if something doesn’t quite fit in it then they disregard it. He explained that the reason nothing was showing positive was that my peripheral nerves were not yet damaged, they were just aggravated by something. It could be either an immune response or a chemical reaction to the antibodies. Further more, aggrevated (or even sometimes inflamed) nerves don’t raise ESR or show up on NCS and the symptoms come and go. Scary thing is though that the longer they remain aggravated, the more chance there is of them becoming permanently damaged.

About two years ago I was taken to A+E when I woke up unable to swallow with a mouthful of stomach acid and trouble breathing. The A+E doc said it was typical Sjogrens and that I should find myself a decent Rheumy. I did and while waiting for my appointment I started to have trouble swallowing, ear pain and tinnitus, balance issues, wobbly legs, couldn’t see straight, sleep apnea, swollen red face, eye pain, sore burning and crusty nose, headaches, bouts of gastroparesis, sweats, severe scalp pain and joint pain. I was sent to a Neuro Psychologist who wanted to talk about my childhood problems and schooling. I’m afraid I got rather angry and didn’t go back again.

My Neurologist sent me for autonomic testing. Tilt table and all the tests involved with that were normal. However, the sweat test was anything but. Strangely though, I was told that my pattern did not fit with anything and I was diagnosed with “multiple unexplained symptoms”. Considering this was from a top, highly regarded London Neurology hospital, that was unacceptable and I complained.

I was sent for a small fibre neuropathy test which is a skin biopsy and although the fibres were normal and not decreased, the temperature sensation in my feet was abnormal and the report said this was commonly seen in Sjogrens. My Neurologist had that look of “told you so” on his face.

I then found a wonderful Rheumatologist who diagnosed me with UCTD as I have a really high RF, complement levels up and down and ANA’s speckled pattern visible but not strong enough to give a positive result. He said it can take years for the antibodies to become positive but 9 years? Really?

Steroids work great until trying to wean off so I tried Methotrexate which worked well at first but then seemed to stop working and I got Laryngitis and a chest infection with no white cells to fight against it so had to stop it. Next visit we are going to try Aza.

At the moment I am suffering with swallowing problems, diaphragm pain which makes breathing lying down almost impossible, burning mouth and tongue pain which is causing speech problems, gastric problems and dizzy spells. I also have joint and muscle pain with different muscles weakening daily, a lost sense of smell, taste and appetite and I'm very shaky. I also have degenerative disc disease but I can’t take pred as I have managed to get a genetics appointment and I have to be steroid free for that. I only have 2 weeks more to wait.

I pushed for this as my mother had erythromelalgia and there is a link there with autoimmune disease. She also had bowel problems and so does my daughter now so I’m hoping for some answers.

I have always been so adamant that this is Sjogrens but now I’m doubting myself and worrying as to what else it could possibly be. Tests are slowly picking up on a few things now like optic nerve changes and eustacian tube dysfunction but then on re test they are normal.

I completely understand what all of you are going through and the fight some of you have had to get anywhere. I have had to fight every step of the way for referrals, tests, and just basic acceptance of doctors to listen and take me seriously. This has to change.

Anyway, I am so sorry for rambling on but hopefully my rambles will help someone somehow and hopefully some of you can help me shed some light on all of this.

Thanks so very much and love to you all xx

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  • Once upon a time there were multi-disciplinary teams - they weren't perfect because they didn't have the back-up they could have now, but they did at least look sideways now and again.

    I wish I understood where the idea came from that patients have to tick only the right boxes to get a diagnosis. That if you have something a bit unusual it is "atypical". Which in my dictionary means it is not quite what they usually see - not what they appear to think too often, it is a bit different so it can't be that. And as I keep asking on my home forum - at what point does atypical become just part of a range? Because they tell about 50% of us we are "atypical"...

  • I'm with you & PMRpro...am so glad you posted Georgie girl...thanks for every single detail...am hugely relating to your story...as I'm sure are others...I'm another oddball case...you're especially hitting home with me now cause my Sjogrens is thought to be more active currently than my SLE...and i've been managing simultaneous erythromelalgia & raynauds for years (am feeling for your mother)... + have spent the past year being investigated by a NHS pelvic multidiscipline team...and then there is the prob that it turns out my infant onset lupus diagnosis got lost when I moved to the uk at 21 (long story...for various reasons my mother kept the lupus diagnosis & treatments secret from everyone including me).

    So, the NHS spent 40 + years saving my life during emergencies + diagnosing & treating what we now know are secondary conditions + blaming everything on my childhood fall from height onto head...meanwhile the NHS messed around half-heartedly investigating me for MS etc etc...

    Finally my visual symptoms became so obvious that I was referred to a brill rheumatologist who recovered my lupus diagnosis...at that point my mother fessed up: imagine our surprise.

    Much of my chronic symptomatology is similar to twitchy's...thank goodness, though: 5+ years on from lupus rediagnosis am 63 and 😊 responding well to my daily combined therapy treament plan...feeling less pain & more resilience + stamina than I have since my early 20s. But the cumulative multisystem damage is done.

    immunology have been investigating me for close on 2 years due to what seems to be an early onset primary immunodeficiency (began prior to treatment with immunosuppressants)

    What next, I wonder?

    Am hoping your diagnostic & treatment ordeal will resolve in such a way that you're feeling better understood, with symptoms as under control as poss vvvv soon...you're clearly a very courageous and empowered woman...you're vvvv much inspiring me to keep on keeping on 😉

    🍀🍀🍀🍀 coco

  • Please do keep on keeping on Coco, it really does seem sadly the only way to help ourselves. I'm so sorry for everything you have gone through and for so long, it must've been awful for you. Erythromelalgia is very painful so to have that on top of everything else must be terrible. According to my research there appears to be a connection between that and autoimmune diseases and also something called thrombocythemia which my grandmother had so for me it makes sense to go down the genetic path for answers. So many things are linked, overlapped and yet so different from one person to another it's surprising we actually get anywhere. I really feel for you and hope you get some answers soon but in the meantime it's so nice to take comfort in the knowledge that others share your problems.

  • 👍👍👍👍 😘

    and it's WONDERFUL Lupus UK is here for us, making this solidarity & info sharing possible

    I hope you'll join in here as much as poss...your experience, way with words & philosophic take on this stuff are a delight 😆

  • Thank you for your kind words and yes, I will certainly join in as often as I can.

  • Georgie-girl your story makes me feel positively lucky. I'm with you all the way. I can't write more than this now as back from choir which is totally exhausting and got to sleep. But will be back in the morning to chat and just want to wish you a very big welcome. 🙃😊😴

  • Aww thank you so much Twitchy. Looking forward to chatting with you and hope you get a good nights sleep.

  • Hi George-girl (fingers bad so might have to shorten this to Gg with your consent?). Thanks I did sleep well although howling gale up here but I was too tired to care. Fraid I still am wiped out so reclining on sofa with both dogs while hubby sleeps off a night shift. Eyes are truly awful today -maybe because of very bright lights at choir practice?

    It sounds as if you've been tested over and over ad infinitum so all I can say is that seronegativity can be a complete nightmare. You've been on the journey for three more years than me and it does therefore seem odd that it didn't show up in your lip biopsy as it did for me? I know it can take a while for the lymphocytes to cluster around the salivary glands but you've had yours for too long for this to matter I imagine? I have read that drugs such as DMARDS and steroids can knock the results sideways. Could it be this with you? It took six months off virtually all but thyroid and BP med to show up in my blood as a clear positive ANA. The previous rheumy refused to acknowledge that six months on steroids (low dose 7.5mg by time of testing) would make a difference to my autoantibodies. But he was wrong and it surely did!!

    We do have a regular contributor here called Cuttysark - whom I believe is away on holiday just now. She has had Sjogrens for years but can't get an official acknowledgement either. But in her case I think this is because she takes steroids for her Addison's so can't stop these but it can badly skew the results. Like you she has so many recognised symptoms and comorbidities of SS/connective tissue disease that it seems to defy logic for her to still be officially undiagnosed.

    But even with a confirmed diagnosis like mine, many with SS are not put on DMARDs because we have increased tolerance issues due to not having enough moisture to rid ourselves of the toxicity of the more aggressive medications such as Methotrexate and Azathioprine. I actually have come up with this theory myself, after severe allergic reactions to four, but it has been confirmed/ corroborated by people with medical/scientific knowledge and my rheum.

    In fact I have a friend with severe seronegative RA, who has just had to stop yet another drug, Rituximab, because of intolerance /allergic reaction to it. She also has confirmed severe Sjogrens with her RA and has almost completely run out of treatment options now - but is about to start Hydroxichloraquine now for first time as last RA drug she's never yet tried. Fingers very crossed for her.

    Also our risk of Lymphoma is significantly higher so I wonder if this is another reason so many with SS often aren't offered the meds that those with other rheumatic diseases are? Suppressing the immune system makes us even more vulnerable to this type of cancer.

    So even with a confirmed diagnosis there seems to be a deep reluctance on the part of the medical profession to treat Sjogrens with anything other than topical medications and occasional steroids plus antidepressants and anticonvulsants - which can all cause tolerance issues too and worsen the dryness.

    To my mind this makes it an even bigger 🐷 of a disease! (Sorry to the 🐷 🐷 🐷 for this metaphor!) X

  • Hi Twitchy, thanks for your very informative response and I'm so glad you slept well.

    What a nightmare us sjogries go through, I can't believe poor old Cuttysark still has no definitive diagnosis confirmed after so long.

    To be honest I've never really thought much about steroids affecting the results. I had my lip biopsy about 2 and 1/2 years ago and I can't remember if I was on steroids at the time or not. It did show inflammatory cells but I think there were too few lymphocytes from what I remember. I do know things weren't as bad as they are now though so perhaps it's time for another one.

    It does all seem strange though considering I have the antibodies in my blood, they can actually be seen but it still doesn't give me a positive result.

    I was told once that my body was just extra sensitive and recognised things that normally wouldn't be noticed by the body. I don't know if I'm buying that but I guess it could turn out that when my body has actually caught up with itself then I will have a positive test ;-)

    I know what you mean about the methotrexate. It seemed to work great at first until I ended up with laryngitis and a chest infection with no white cells to fight either. I'm supposed to be giving azathioprine a go when I next see my Rheumy so fingers crossed I get some relief from it even for a short while as I think the hydroxy has run it's course.

    It can be quite scary having no definitive answers as even though you know what's wrong, there's always that "what if" in the back of your mind. My mind has played some terrible games with me about what it could be if not sjogrens especially when new symptoms rear their ugly head.

    Oh the joys of a connective tissue disease.

    And of course Gg is fine.

  • Given we Sjogies are extra sensitive to meds, it goes without saying that if you feel that having a solid diagnosis of a CT disease is the main priority for you then you should really give yourself about six months completely clear of DMARDs and/ or steroids before you get your lip biopsy and autoantibodies checked or lip biopsy redone. Whatever your rheumy says, if you want a positive diagnosis this is probably the best way to be sure of it.

    Alternatively,as you have a rheumy who believes and is prepared to treat you, despite no positive markers for a CT disease - I would ask yourself whether you're prepared to have a complete boycott on meds in order to get complete clarity from my repeat investigations. I can't emphasise this strongly enough!

    It is now exactly a year since I last took any steroids and 16 months since my brief and traumatic skirmish with Aza. I'm hoping that the new rheumy will agree to letting me try Mycophenolate before the year is up.

    A whole year off all rheum drugs and pain relief and I've survived! Things do hurt horribly sometimes and my body crawls and fizzes and my extremities freeze and burn sometimes too. I feel ill often although I hide it well. My balance is rubbish and my energy levels are minimal, I'm scraping through each day now. My over hearing plus loud and relentless tinnitus are horrible. But at least I can say with complete certainty now, that I have Sjogrens plus dysautonomia - and know that none of this is in my head or the result of powerful anti rheumatic, anti seizure or OTC drugs.

    And psychologically this puts me way,way ahead of where I was this time last year even though I wasn't feeling as physically a fraction as rubbish as I am now! X

    Ps - someone followed this post of mine from two years ago. It came as quite a shock reading it through again two years on. I was so confident in my doctors and the RA diagnosis then it seems! Might have relevance to you too perhaps. Aza gave me pancreatitis after 3 weeks.

    Going to stop Methotrexate - what next? Azothioprine?

    Twitchytoes 2 years ago 21 Replies

  • Thanks Twitchy.

    I have been off Meth since about June and pred since about the same time. Things weren't too bad at first and then I had to stay off for a lumbar puncture. Later I was told I had to be med free for my genetic appointment next month so I'm clean apart from the hydroxy. I was due to start pregabalin but again, had to hold off till next month. Maybe if I try a lip biopsy in the new year (if I can stay med free for that long) it might, just might, prove positive.

    The aches and pains I can live with, even the balance, vision probs and everything else it's throwing at me. What I can't handle too well though is the swallowing and digestive issues. From the odd sensation inside of my mouth and sore tongue right through my tummy and to my bowels and if it's not one section of the tract it's another. This has all started since I stopped my meds but that could just be a coincidence.

    One day at a time and hopefully I can do it.

    For your tinnitus, have you tried soft background music? It helps me a lot with the buzzing and whistling but doesn't help much with that horrible clicking noise that nothing seems to shut up.

    What do you mean by your body crawling and fizzing? Sounds like something I get and can't find an answer for from anyone. xx

  • Hi again. Sadly your suggestion for my tinnitus makes no odds at all. It is just terrible at the moment and my longing for peace and quiet are Insummountable. The thing is that mine has come with an intolerance of all sounds -especially coffee machines and grinding. Plates and cutlery clattering and loud voices or canned music are bad. I jump out of my skin when car alarms go off and cover my ears when people have loud,obnoxious ring tones. I spend hal my life avoiding loud noises - and now I get this tinnitus which I can't blot out or run away from! If only I could get shot of it as easily as just with ambient noise I'd be dancing despite my achy joints! even gentle music/ white sound such as the wind is like s kind of hell!

    In my case the crawling and pins and needles started about four years ago and have steadily escalated to this bone and nerve pain plus. It includes my face, gums, lips, nose and eyes. I have a foul taste 24/7 which doesn't remit apart from very briefly when eating. I think all is neurological with me and my neurologist supports this idea that I have small fibre neuropathywith mild ganglionopathy which is steadily and rapidly worsening. My feet freeze,I don't sweat apart from in the early hours when I sometimes wake soaking. I too find it hard to swallow often and have intermittent dry cough and heart burn plus the strangest bowel habits (undigested - yikes!)-which is thought be rheumy and neuro to be my Ganglionopathy/sensory autonomic neuropathy/ dysautonomia rather than comstipstion due to dryness. I do think tinnitus must be part of this but I fret extra because of having both my siblings profoundly deaf from birth and my dad with hyperalacusis from childhood.

    Heck I promised an old friend I'd go down the hill to her 50th party/ disco later on tonight but tried to warn her I might not last long because talking and music are the hardest things for me. When I only had RA I just stuffed my body with naproxen and wore an ankle splint and danced the night away!! Those were the halcian days it seems!

  • Poor you with your awful hearing. How on earth do you get through the day? I really feel for you as there's nothing worse than loud noise you can't escape from when you want. I guess you can't even use ear plugs to block the outside noise out as then you're driven mad by the tinnitus. I imagine your family history doesn't make it any easier and I'm so sorry. I believe it is all part of sjogrens though as practically all the people I have met with it have tinnitus.

    I too have lots of neurological things that happen, in fact, mine started with tingling and numb spots, blurred vision, the oddest of sensations and bladder problems. I'm told that often neurological sjogrens doesn't produce any antibodies but weather that's correct or not I'm not sure. I also have the face pain, gums, lips, eyes etc and a disgusting taste although this comes and goes thankfully so I don't have to put up with it 24/7 like you.

    I hope you make it to your friends birthday bash and hope that you manage to enjoy it a little without too much ear discomfort. xx

  • Thanks dear new Sjogies friend Gg! I'm determined to go and enjoy it somehow. I believe it's a matter of how we have been brought up to respond to adversity and how we cope that affects what We can still achieve the most? Look at Stephen Hawkins? Glass half full all his life I suspect because he's got so much he passionately wants to achieve abs know during his lifetime.

    Some people tell their stories on here and other forums and I quake with conpassionor horror for them and think my problems are relatively trifling. In fact I'm determined that they are!

    But sometimes mine get me down too and then so much as a cross word or put down from another forum member, saying how theirs are worse or similar, will push me through a trap door in the ground where I'll remain in a deep down way.

    So it's very heart warming when someone just says they understand rather than comparing their plight to mine. Makes me feel stronger.

    And that's what you have done even though it's your post and your story. I'll try to dance for both of us and try not to break a few people's ankles as i go! Ear plugs and glad rags at the ready!! 💃🏻 X

  • I just can't imagine how awful your hearing/add-ons are - I get irritated at what i hear in the building overnight! If the lift is in use - I hear it. Dogs, children - drives me nuts. And I think it is just I didn't abuse my ears in my youth!

    Hope you made it...

  • Only just back! Silicone ear plugs from Boots are just fabbydoo! I danced most of the night on my own with a few drunks! Unfortunately many old friends (parents of my kids friends from babies onwards)tried to converseover the din. So I showed them my transparent ear plugs and said I need jelly babies for my lugs these days - most of them fell about laughing at me promised to catch up one day but not tonight!

    They all said they could t hear me and asked if I have laryngitis too? So I nodded solemnly and said I'll need a blue rinse and walking aid soon only good for dancing ha ha -little did they know the walking stick was in the cloak room! It must be odd seeing someone you know dancing in a trance with ear plugs on and then unable to stand up and chat. But I think sine might understand that standing is actually the hardest thing for me to Di these days? So I just went and sat in the corner and glugged from a huge glass of water between songs! I even managed to raise a sweat so rather pleased with myself and the birthday girl told my hubby that they were al thrilled to see me as I'm not often very sociable as I used to be. Happy even if it's noisy in my head still!

  • Glad you had a good time xx

  • Aww that's lovely of you to say, thank you. Hope you danced your socks off xx

  • Hi Georgie-girl,

    Thank you for sharing your story with us. How dreadful that a diagnosis has proved so difficult and that in many instances your concerns were not listened to.

    I hope you are finding this forum helpful and please keep posting and updating us.

    If down the line you are still not satisfied with your rheumatologist, we can also provide you with a list of lupus specialists in your area. Don’t hesitate to email me at Fabienne@lupusuk.org.uk

  • Thank you Fabienne, that's very kind. I am ok with the Rheumy I have now, the only problem really is when you don't get to see the consultant and end up seeing one of the registrars who really don't have a clue and should not be let loose around complex patients. I usually wait longer if needed to see him but on this occasion he was at a lecture elsewhere.

    I am finding this forum wonderful and I will definitely keep you updated.

    Thanks again.

  • Hi Georgie-girl

    Thank you for posting your story, its nice to know there are others going through similar experiences.

    I too have Sjogrens and with neurological complications, I'm lucky in the sense (if you can call any of this that) that I was diagnosed early on I originally had vasculitis and after further tests was found to have anti ro and anti la antibodies, a high positive ANA and the rheumatoid factor positive so was given my Sjogrens diagnosis. It was manageable initially with steroids and hydroxichloroquine but then neurological complications set in and a lumbar puncture indicated CNS inflammation. I was on mycophenolate for 4 years which took care of the numbness I had in my limbs and face but my dizziness/balance issues have continued and I have had so much frustration trying to get to the bottom of it.

    I was diagnosed last year with POTS and even though I have been on medication to get my heart rate down and push my blood pressure up the dizziness is ever present, my specialists are brilliant (I also see Dr D'Cruz) but they have been a bit puzzled as to why the dizziness is still there, but I had an brain MRI recently though which showed a micro haemorrhage and so have been referred to a neurologist again. He seems really knowledgeable and I have several more tests coming up but then will be on a different medication regime and hoping it will help as he said the inflammation is all due to the antibodies still. I can't stand unaided and keep my balance and am so restricted and just hope for the day I can wake up not dizzy.

    I notice you said you were told you were hyperventilating, when I had breathing tests I was told I was too and was told its all part of the autonomic dysfunction and just becomes habit, I had respiratory physio which really helped me and has slowed my breathing right down.

    Do take care and ask away if I can help.

    Jenny

  • Good grief Jenny, how terrible. You say you feel lucky being diagnosed early but all the other stuff that's going on doesn't sound very lucky to me. I'm glad though that a lot of your problems are under control and you are in good hands with Dr D'Cruz.

    I agree the dizziness is horrible but it sounds like you have more than your fair share of it. Do you know what tests you have coming up with the neurologist? Hopefully one of them will get to the bottom of it.

    Have you been offered IVIG as I believe that's great for reducing the antibodies?

    Thanks for the tip about respiratory physio, that might be something worth me looking into. My problem I believe is the nerve to my diaphragm as it gets so painful in that area sometimes on breathing and breathing while lying down is a definite no no. Having said that it does come and go so I don't live with it constantly.

    Do please keep me posted as to how your tests go and your new med regime.

    Lots of luck X

  • Thanks for the reply, its not that bad its just the dizziness that gets me down. The tests I'm having are another MRI and an internal auditory meatus, a nerve conduction study, a electromyography and a thermal threshold test and then hopefully new treatment. Yes IVIG has been mentioned or maybe methotrexate.

    The physio I saw was on the NHS and really good, I remember reading about the vagus nerve involvement with autonomic complications and think that affects the diaphragm but I expect you've read up on all of that as it sounds like me you've done a lot of your own research over the years. I had symptoms from my dysfunctional breathing that I never related to it, hiccups, indigestion and a feeling like I couldn't get enough air in and so used to take big deep breaths in every 10 or so. He also explained it causes dizziness due to low carbon dioxide levels. Does any of that sound familiar? Its all so complicated isn't it?

    Thanks again

    Jenny

  • Actually yes, it does all sound familiar and I've been questioning the old vagus nerve for ages but to no avail. Thank you. You've certainly started me thinking as I've been suffering long bouts of hiccups for the last year or two and it's worse when I eat or drink. (Hiatus hernia?) The deep breaths too are so familiar. I feel like I can't get enough air in and often through the night I can't breathe through my nose due to crusting and burning so this adds to the feeling of suffocating and to the dry mouth and the sleep apnea blah blah blah and round and round we go again. It certainly is so complicated I must agree.

    I'm glad you have got all these tests coming up and hopefully you will get some satisfactory answers but what is an internal auditory meatus? I've never heard of that.

  • I just wanted to respond to you and Jenny to say I have exactly the same issues with irregular breathing, hiccups and feeling i'm not getting enough air into my lungs, also swallowing when my oesophagus seems to forget what to do and same with bowel and bladder function. All part of dysautonomia from our autoimmunity I've assumed.

    I didn't have these issues so much when I was on antirheumatic drugs, including Methotrexate, but then maybe it would just have worsened regardless. Sometimes it's very frightening - especially the swallowing and breathing issues.

  • Thanks TT. I guess this is a common set of symptoms then for sjogrens and lupus by the sound of it. I don't think my bowels belong to my body sometimes as they seem to have a mind of their own. For me though it's the swallowing I can't handle. It feels like the muscles have stopped working and that I have something hanging down the back of my nose and throat blocking everything off. Then the tingling and burning starts in the back of the throat and then the annoying throat clearing cough.

    Yes it is frightening at times. I don't have much of an appetite these days as it is but It's getting to a point where I'm scared to eat in case I choke. Like you TT, I don't recall it being this bad when I was medicated but as you say, maybe it would have just worsened anyway.

  • Yawning was another symptom I had, yawning one after another for 10 mins or so and then nothing and its gone now since my breathing has slowed down. In my case I think the hiccups were caused by swallowing air as I tried to co ordinate breathing and eating and then it would make me feel sick.

    The test is a scan of my inner ear and the areas around but Im not too sure what it entails, its in 2 weeks so I'll let you know.

    Jenny

  • Oh I see but I have never heard anything called anything like that. I had some odd tests on my inner ear, one in a darkened room where you have to watch little red lights dance around the walls and another where warm water is poured in your ears. I'm still waiting for the full results but preliminary results showed nerve problems in inner ear and lack of co ordination with eyes. I think it re confirmed my eustacian tube dysfunction too. Also had an acoustic neuroma MRI which was normal. Wow the things we go through huh?

    I can identify with the yawning too but I think that's because I'm always so wiped out even if I've done nothing.

    Has your swallow improved since your breathing has? Mine seems to be getting worse even when the breathing problems are having a day off.

    Gosh I wish I could wave a magic wand and make everything ok.

  • I really feel for you Gg because, unlike me, you don't yet have the definitive diagnosis of Sjogrens. This makes it more scary I think because if you are rushed into A&E they need to know. Although I guess autoimmune/connective tissue will probably be as much as most general doctors need to know plus drugs you are on. I just find that I panic less about the swallowing and breathing issues now I've worked out what is causing them. Mine isn't as bad as yours so I can eat quite easily as long as I have a large glass of water handy at all times -especially if eating anything hard or dry. Before my diagnosis I was really panicking when my oesophagus shut down. And the breathing issues are quite scary too but I have started to carry water with my everywhereand try to have a plan for somewhereI can lie down if I need to.

    Next week I'm going to London on my own for the first time in two and a half years. It's for a special family event a week on Monday so I really do want to go.

    I'm staying with old friends and my sisters but still very apprehensive. They will all be warned about the crazy swallowing and heightened fatigue by me but still.. it's the travelling around i am fretting most about with all these strange and worsening autonomic problems. Good to feel I have others here to share this with though. I hope you feel this way too? X

  • Yes TT I do feel the same. It's wonderful to have people with similar issues to share everything with. This is a great little community.

    I must say though you are very brave doing all that travelling alone. I barely go to the supermarket alone these days as I start to panic wondering what if something were to happen. I'm trying hard to get over this but it isn't easy and I have no idea where it sprang from or why it started.

    I really do hope you have a wonderful time.

    Your oesophagus shut down? what on earth happened?

  • Maybe shuts down is too strong a description but it's as if it locks and I have to stay calm and drink something slowly until it relaxes enough to allow me to swallow. The pain is quite far down in my trachea not just in my throat. I'm a bit baffled because my mouth isn't particularity dry usually and teeth are fine. I think it must be part of the neuro stuff as I have this neuropathy horribly in my gums and lips. 😜🙄 I do have GERD but this wouldn't explain it.

    I'm a bit masochistic about my adventuring. I had an RA flare (or rather primary SJogrens with hindsight!) in my left ankle once and hopped with a backpack down four flights of stairs with only a sock on and my boot in my bag, got a bus to the airport but no seat so borrowed and old lady's zimmer! Finally got assisted travel when I fell over at check in queue - told them I'd sprained my ankle. I kind of propel myself into situations like I'm in the Famous Five or James Bond. Then crumble when I'm home again! I think it's called being in denial rather than any kind of courage! X

  • I can identify with pain in the trachea. When I do eat I can feel it sitting there almost like it can't quite get to my stomach. That's a horrible feeling. I'm surprised though that your mouth isn't dry. My dryness comes and goes but my teeth tell the tale. My dentist knows when I have a flare as I usually need a root canal or another crown. Never had any teeth probs before this now my mouth is full of crowns and bridges.

    I love your bionic woman attitude ;-) That did make me laugh but don't over do it. xx

  • Ha delighted to have made you laugh Gg!

    Re the teeth. Mine were lousy all the way through childhood onto motherhood. But bizarely, despite crowns, abscesses and fillings they ceased to cause me any bother once my RA was diagnosed five years ago. I wonder if this was due to my hormones settling down after an early and uneventful menopause? My eczema of a lifetime also disappeared from around this time too. Perhaps it was eliminating refined sugars and gluten from my diet over this period or simply the hormonal changes leading the visible to disappear and become invisible somehow? However the phantom pain/ parasthesia is awful a lot of the time in my mouth and lips and my gums feel infected plus this terrible taste. All neurological pain so the dentists and oral consultants have unanimously told me.

    I sometimes wonder if I wasn't landed with all this autoimmune weirdness by some bizarre planetary force, in order to challenge the medical profession's preconceptions about invisible illnesses and women of a certain age - specifically about Sjogrens!

    You should have seen the look on the face of the oral consultant who conducted my ultrasound of parotids a few months ago - absolutely normal, as are my teeth and gums these days. Then he went off and came back and told me that he was incredulous to learn that my lip biopsy was so extremely positive for SJogrens. I wasn't. Pain like mine has to come from a disease process and I was just so grateful to those wee salivary glands for presenting me.

    My eyes are a more reliable measure. As are my bloods and cerebral spinal fluid and brain. All these are abnormal enough to prevent a few otherwise arrogant doctors from dismissing me entirely as an overly fanciful middle aged woman! And my new (retiring) rheumy was openly gratified that his detective work had paid off where his predecessors had failed! A bit of coup for his final caseload!

  • I sometimes wonder if I wasn't landed with all this autoimmune weirdness by some planetary force, in order to challenge the medical profession's preconceptions about invisible illnesses and women of s certain age - specifically about Sjogrens!

    Brilliantly put TT.

    Perhaps that is our mission in life.

    I often think I should be writing a book aimed at doctors enlightening them to our plight.

    Something for the future maybe.

  • Yes have been trying to write a book like this actually. I keep getting stuck though. I've tried to draw it because I'm an artist. It's too raw to depict in illustrations though. Then I find myself wondering what makes doctors become doctors. I realise there will be a wide variety of motives but still this question preoccupiesme.

    How many just forget that we know our bodies and they should trust us just as they expect us to trust them? It needs to be a partnership and they could learn so much more about autoimmunity by really listening to what it feels like to be us. X

  • No me neither but that's the wording on the hospital letter. I've had those tests too but not the hot water mine was hot air one ear at a time and what a horrible feeling I felt like I was spinning in the chair getting faster and faster, it took days to lose that feeling.

    My swallowing has never really been a problem so that's one thing I can't identify with.

    Yes like you say the things we go through, oh to have a normal life!

  • Jenny14, I have read that diaphragmatic weakness/malfunction occurs in up to 25% of lupus patients. Mine is terribly weak & proven on repeated PFT's yet it was blamed for years on my lowish body weight and vegetarian diet . . .

  • Thanks Clare that's interesting, gosh the problems this all leads to seems endless

  • I'm sure your doctors wil be onto this with your PoTS Jenny - but the Ganglionopathy of Sjogrens causes autonomic issues I think - it certainly does for me. So, as Georgie-girl points out, IViG might be a good option for you if you haven't already tried it?

    It's an option I wish I was being offered as the disequilibrium/ proprioception issue makes navigation on foot very hard all the time as I'm continually stopping in my tracks and prodding the ground ahead with my cane to check if it's as I perceive it or not.

    Looking to the side or up is a complete no no these days as it feels like falling off a cliff! I feel like a wind up toy sometimes as have to just go straight ahead without turning my head or re-boot myself to turn. All part of the SS Ganglionopathy my neuro tells me. Always feel slightly stoned these days. And mine is still mild!

  • Yes Im being well looked after and hopefully soon something will make a difference, the POTS is all related to the sjogrens and the balance side just adds to the mix. I was told years ago that peripheral neuropathy and autonomic problems often go together. I can relate to your description of walking I have to look to the ground all the time and avoid any distraction of other movement around me but its the stopping and standing still that's the problem.

    And yes I know what you mean about that feeling, my mind never feels quite with it.

    Take care

    Jenny

  • You too Jenny - so much of what you describe feels familiar to me. I will watch your posts for how your very good sounding medical team are working things out. It's getting exausting just existing these days! X

  • Ps I should say that my neuro says my disequillibrium/ dizziness relates to proprioception issues caused by death of the tiny nerve fibres in my feet and ankles and everywhere else. Possibly large fibres now too (awaiting nerve conduction studies to see). The feet fail to send the right signals to the brain via the spinal cord I think. Very common with diabetes which I don't have. But a percentage of Sjogrens sufferers get this and that's me - you too?

  • That's interesting, if I cant see the ground I'm definitely worse and feel like I'm stepping ahead blindly but think mine is vestibular too as on a bad day everything I look at that should be flat or straight is on a slope to the left and whenever I walk I drift to the left.

  • It's incredibly complex as you've said. I forgot to tell my neurologist about my tinnitus and hyperacusis - but phoned GP the other day (I'm living far away from where I'm registered just now) about it to ask for an ENT apt and emphasised that both my siblings are profoundly deaf and my dad had significant hearing issues too in the hope that she might mark it as urgent. I'm way behind both of you in terms of investigations but I think my tinnitus might either be coming from the arthritis in my neck or is neurological - I favour the latter as it is constant very high frequency and worse when I wake up. I think if it was a pinched nerve from wear and tear arthritis then it would be worse at night. I've read that an exaggerated sense of sound is usually neurological autoimmune. But as the tinnitus has arrived long after my balance problems began, the neuro might be right to say mine is autonomic rather than vestibular.

    She diagnosed my autonomic neuropathy by the fact I failed my Romberg (always fall to right) can't hold arms up straight ahead and can't walk heel to toe without major wobble. Also she found I had no reflex response in either elbow and looked into my pupil response with a torch.

    But your doctors sound pretty gemmed up so sure they would know the difference between PoTS with vestibular disorder and Sjogrens related ganglionopathy - however subtle the differences might seem to us. Tx

  • Hi Georgie-girl . I nearly didn't read your post as I don't believe that I have any Sjogrens symptoms but I'm so glad I did because much of your experience is like reading about myself. My dx hovers between Lupus and Lupus/UCTD with low C3C4 and borderline ANA. I experience some of what you do and I was particularly interested in your 'Eustachian tube dysfunction'. Would you mind telling me a bit more? When I have prolonged spells of being unwell, my tubes seem to block but with no cold/infection to blame. My eardrums have even burst at times but there's nothing other than air behind the perforation. I've never tried to make any lupus connection in the past.

    I wish you all the best in your forthcoming appointment(s). Thank you for posting your story. Clare X

  • Hi Clare,

    I'm glad you did stop by and read my post as it's always nice to meet someone else with similar symptoms and experiences.

    How did you get a Lupus dx with borderline ANA? Did you have high levels of inflammation or abnormal ig's?

    Of course I don't mind telling you about my weird ears and from what you say it sounds like it could be eustacian tube dysfunction you are experiencing.

    For months I had this feeling of fullness in one ear like you have been swimming and the water stayed there. When I'd talk I sometimes could hear it in my head like you're talking underwater.

    When I tried to blow my nose my ear would hurt and I'd get sharp stabbing pains in it. It sounds weird but I swear it would make funny noises. Apparantly the tube is supposed to open to let air flow through but when it doesn't, you get the feeling of blockage and fullness. It's a nerve thing. Mine eventually led to a full faced feeling of sinusitis and an inability to blow my nose as it all felt congested and dry. I had no infection either. Then one morning I woke to find my ear hissing like air was flowing out and I needed to blow my nose. That's how we go now in cycles.

    Haha, I have just read this back to myself and laughed. Good grief, if you said something like this to someone who doesn't share our strange symptoms they'd have you certified ;-)

    Hope this helps a little and please do ask away if you want to know anything else. X

  • Goodness, this exactly what I experience. I would never have thought to blame it on the inflammatory process.

    My journey to dx differs from many. I was dx'd at my very first appt back in 2001. My symptoms were so textbook that my Rheumy diagnosed, treated and used me for photographs for her university students then and there but my bloods were unremarkable. My dx was reviewed by a leading lupus professor in 2012 and changed to SLE/UCTD due to lack of antibodies but is now back to SLE. I'm unmoved about the title they give it and always have been - I've been lucky enough to be treated regardless. I'm guilty of a 'head in the sand' approach xx

  • Hi Georgie girl

    Wow!. What a story and battle you have had these last nine years trying to get a diagnosis!. I admire the way you have battled and come thru so many tests!. Thank goodness you found a good neurologist and Dr d cruz in London as you have had some cruel things said to you just because your symptoms haven't shown in the usual way. That can happen to many of us on here as it has to me which is why we need open minded specialists!. I've been diagnosed with UCTD for 29 years and I understand that if the antibodies haven't changed after a period of years then they may not and you stay with this label!. It still has to be checked on as any new symptom might just change outcome!. I wonder if you have had the experience of doctors I have in that some assume that you've wanted attention and to be tested loads when they see a big hospital file full of notes and results!. Not accepting that it's been because of real problems that need investigating!. Despite their training that should be teaching them open- mindedness , there are still some very cruel , prejudiced doctors sadly for us!. The good ones we have to stick to like glue!.

    Good luck with trying Aza, a good DMARD that I hope will work for you. I hope you like the forum, so pleased you've joined, your not alone on here. X

  • Thanks Misty,

    It's lovely to know you're not alone and I think this forum is great. I never would have believed there were so many people waiting so long or fighting for a diagnosis. Kind of being stuck in no mans land.

    I completely agree with your comments on open minded doctors. Sometimes I wonder if some of them actually went to med school and some of them certainly have no bed side manner. I too have a huge file full of different doctors, departments and tests and I just know what they are thinking before I open my mouth. I once saw a neurologist who looked through my file, noticed I had seen neuros before and asked me what did I think he would find that others hadn't and discharged me without so much as a knock on the knee with his hammer. It used to reduce me to tears but I now put it down to their ignorance and medical incompetence and try not to let it get to me.

    29 years is a long long time to still have no definitive disease but it just goes to show how complex these diseases are.

    I hope you now have a great doctor caring for you. X

  • Hi Georgie girl

    I am sorry you have had such bad experiences with neuros and totally agree with your comments and how you view these doctors. Your a strong lass to be able to and I hope you have a nicer Rheumy. It doesn't really matter what the name is as a diagnosis is important to validate our struggles. It's just important to have the regular checks from a Rheumy as things can change but the treatments are the same so we don't miss out!. I do have a good team of doctors now working in my local hospital which I'm very grateful for but have needed due to having other health diagnoses as well , thanks for asking though. I'm glad you like the forum, stopped me feeling isolated and love helping others with my experiences. So glad you've joined, keep us posted about Aza, hope it works for you. X

  • Thank you Misty and I certainly will keep you posted.

    If you don't mind me asking, what other diagnoses do you have? Hope it's nothing too bad.

  • Hi Georgie girl

    It s a bit of a list, ulcerative colitis, Raynauds, hiatus hernia, osteoporosis, interstitial cystitis and femoral nerve damage in right leg most recent and painful!. These have been gained over the years , some are due to steroid side effects!. Do you have many diagnoses too?. This is why I see three different consultants regularly!. X

  • Hi Misty,

    Phew, that's a lot.

    I have ulnar nerve neuropathy, degenerative disc disease with reversed lordosis, Eustachian tube dysfunction, (and something going on in inner ear but still waiting results)osteoarthritis and am being investigated for stomach and digestive problems. Some of them not too serious but the discs and stomach issues are quite worrying.

    Rightly or wrongly, I blame everything on the autoimmune condition as I never had anything wrong before that started. Now it seems the lists of things acquired can be endless.

    Happy days X

  • Hi Georgie girl

    Your having to cope with a lot too, I'd forgotten I've got osteoporosis in my spine( inevitable changes) and neuropathy!. Are you having tests at the moment for your stomach or still waiting?. Good luck for those, keep us posted. Your so right, can end up on lots of pills with all this. Happy days indeed!. X

  • What a pair we are! I have been having ongoing stomach tests actually. I had delayed emptying that suddenly corrected itself and a colonoscopy that showed slowed transit that also disappeared. My doctor has been trying to catch things during a flare but we never manage it. My neuro puts it down to autonomic involvement. Had a barium swallow last week but still waiting on those results.

    These horrible autoimmune things are so much more than aches and pains and a little dryness as some people think. X

  • Hi georgiegirl

    You might be interested in this good website gimotility.org.uk it can be so hard to pin these symptoms down making us feel like hypochondriacs!. It sounds like you have a very supportive GP which is great!. Good luck for your swallow results. X

  • Thank you Misty,

    I'll have a good read later.

    Thanks again X

  • Very true Misty. I've just been chatting to a man with ME who now can't get any further investigations from my old GP who just keeps pushing antidepressants at him.

    Even though most people, including some GPs, don't know what Sjogrens is - I feel so much better about my symptoms now I know that I have a definitive diagnosis of this disease that no one can query.

    It was a bad moment in my life when my previous rheumy said I did not have a connective tissue disease in January of this year. I still find it hard to shake off the stress that man's misplaced certainty caused me.

    Being misdiagnosed and treated for RA, then being undiagnosed by this man felt awful. Even being believed but not having a name to attribute symptoms to is fairly lousy🙄

    But feeling disbelieved is the worst and leads to self doubts and anxiety, which is then in turn attributed to everything by doctors. Surely they should learn in medical school that nothing is ever entirely black and white in most areas of medicine - let alone neurology avd rheumatology?!

  • Hi twitchy

    I couldn't agree more, validation for symptoms means so much to us having to navigate the health system and many doctors attitudes!. Hope your coping X

  • Thanks Misty - yes I'm coping well. I like to learn as I go. Some people do this by taking a more didactic approach to nutrition/ functional and then apply this for everyone as a cure that has worked for them. But my way is to try and work things out for myself, using myself as starting point and then use art and writing to tell a story. We will all respond to different drugs, vitamins, food groups etc so no one rule fits all.

    I rely mostly on myself to know what is real and what works for me but then I find I get to bombarded by the theories of others - and this involves being told I'm vitamin deficient or that cutting out all gluten can cure or that I should take drugs like Pregabalin or that I have Fibro secondary to my SS (not be doctors I should add!). It all becomes a massive jumble of conflicting or differing advice and instructions that make my head hurt.

    So now I just like speaking to people like you who seem to have similar symptoms and diagnosis whether they experience this symptom too. This way I gather my own private evidence and can experiment in my own way for myself.

    Do you find you get bombarded by people who tell you what to eat, what to test, what to read etc? It's so tiring explaining politely that I've tried going gluten free, tried cutting out all sugars and caffeine, tried Palio, tried B12, Taurine, omega 3 etc and none of this has resolved. Saying that no doctor has ever told me I have Fibro or ME so why is a stranger telling me this?

    Maybe the people who insist on these things being the cure for Sjogrens or whatever are those that had it mildly or didn't have it to begin with or were just the lucky ones? It's the need for doctors and other well meaning nonmedical people to be right all the time that I find such hard work.

    Sorry for ramble but it's quite lonely having a disease no one I know has ever heard of🙃🙄 so nice to be able to genuinely share with people who aren't telling me what I should or should t be doing to heal myself of it!

    Must go - oldest son phoning from Sydney! Xx

  • Hi Twitchy

    Hope you had good chat with your son in Sydney and he's doing well. Your strategy for working out what health info might work for you is a good one, important to keep an open mind as you have in trying loads and talking to people who are going thru the same. I've had people making suggestionsover the years and they mean well and want to help but don't realise how annoying it can be because we've tried lots ourselves because we want to be well!. I also find the conflicting health advice in the media, specially newspapersis hard to navigate!. I certainly avoid the Mail . Much better to stick with our illnesses websites ( diagnosis is crucial) and talk to forum members who understandthey've been there done it and got the t-shirt!. X

  • Once again Misty you are spot on! I actually found a group associated with BSSA who meet in Edinburgh so I'm going to try it. First meeting two days before my next rheum consultation! X

  • Please keep us posted on that Twitchy X

  • Hi twitchy

    That's perfect, hope you learn some good things!. X

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