Friday, April 20, 2012

Sjogren's and Ear Pain: I thought it was just me

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My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?




46 comments:

  1. Oh my ! Your post is saving me, I have ear pain since 2 weeks with no idea why, were it come from etc.. And I'm also extra sentitive to sound. Like I have hyper-ear. I use my earphone to avoid sound, not to listen to music !
    And thanks, I don't know this book, I will look for it.

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    1. My gosh, I stumbled up this blog but I am like you. Ear pain, deafness and hypersensitive to loud sounds.

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    2. Crazy I have been chasing my shawdow for over 6 years,I have seen numerous docs to be told its stress ear infections new mom pots syndrome thyroid cyst with possible cancer cells etc.still continue to see docs biopsy scan spit test blood work to now be told I have this srjogens fibromyaligia and possible others. Its crazy how my shawdow was always there but no doc wanted to dig deep enough till now and to find out all of this was all related this whole time; chronic illnesses anxiety sleep issue joint pain throughout swallowing and ear and eye pain ect.my personal opinion is this stems mainly from the thyroid. Regulate me please.

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    3. Try cutting gluten out for 2 weeks and see if you feel any better. The rule is if it doesn't say GLUTEN FREE, it isn't. Also, run a Google search for a video called Fat, Sick and Nearly Dead. Watch it to the end. Don't let the fat part throw you. This guy has an autoimmune disease and what he does gets rid of it!

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    4. Try cutting gluten out for 2 weeks and see if you feel any better. The rule is if it doesn't say GLUTEN FREE, it isn't. Also, run a Google search for a video called Fat, Sick and Nearly Dead. Watch it to the end. Don't let the fat part throw you. This guy has an autoimmune disease and what he does gets rid of it!

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  2. So glad it was helpful to you (although there were only a couple pages in the book). Ear pain, sometimes with acute noise sensitivity, is such a daily struggle that it was eye opening. I too often use ear plugs to help.

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  3. yes! I have had brief bouts of tinnitus( thankfully it seems to resolve itself quickly) and pain in the ear canal. I am currently trying to understand some balance issues I am having and feel strongly it is related to my inner ear. Something feels like it is going on in there!I had an MRI two nights ago which i hope will shed some light on the issue

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  4. I had a MRI too to look at my ears. Wishing you lots of luck in getting to the bottom of your ear and balance issues. We have to be such proactive patients.

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  5. what nobody mentioned is that sjogrens attacks the glands...parotid, submandibular, etc...it causes pain and swelling...thus ear pain...its can be mistaken for tmj...so, do check your submandibular glands for tenderness if youre having ear pain...and have sjogrens

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  6. I am a Celiac patient with many of the symptoms experienced with Sjogren's Syndrome. All my life, I have had ear problems to include necessary tubing. About 10 years ago, I developed tinnitus and neural hearing loss, this cannot be remedied. My gluten free diet has helped with my liver enzymes becoming normal again, but sadly the ear problems still persist.

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  7. Thanks to all of you, I have been experiencing ear and jaw pain as well as balance issuses and pain behind my left eye. I was dx 1month ago with SS

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    1. So glad that you were diagnosed and that this blog and its amazing readers were helpful. For me getting diagnosed was half the battle -- I finally was able to get treated. Hope that you start getting some relief soon.

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    2. I haven't been diagnosed yet. Dr. just says I have the antibodies. In the last month my jaw hurts on and off but no swelling. In all the sites I have looked at no one mentions jaw pain. At least I know now from this post that it can happen.

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  8. Dr. said mine is TMJ.

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  9. I have Sjogrens (dry eyes) and ear pain. I didn't realize they were related. It starts with itching in the ear canal. If I scratch it, I will get the pain. I have found that a heating pad makes the pain go away.

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  10. Wow.. All i did was type in Sjogren's and ear pain and I found this. Thank you. =) I had 2 positive blood counts, a few months ago and a week ago, and for 2 years thought I had MS with all my symptoms. I also have Neuropathy and this is all really starting to make sense to me after reading different posts from people on diff. sites and comment boards. What I'm not sure of is if this is primary or secondary. I've been tested for Lupus 3 times and other autoimmune diseases and had 3 MRI's, Brain, cervical&thoracic and Lumbar. No lesions, but she wants another brain MRI this week. I had white matter showing from the last one but the Neurologist didn't seemed to be worried.. ? who knows now.

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    1. Wow, I have everything you have..finally I was diagnosed with primary bilarary cirrhosis and they thought I had lupus too.i have neuropathy,sjogrens,jaw and ear problems,ringing in my ear,white matter change...i had to get a liver transplant....due to pbc...i would like to talk to you if you like for encouragement...

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  11. I too experience noise sensitivity and constant ear pain..along with the usual awful dental issues. I wish there was a quick fix. :( At least I don't feel alone.
    Thanks for the info.

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    1. Your post has pointed directly at me. I have just been diagnosed, and am now just starting to put all of the pieces together as to what is going on with me. Constant ear pains that were hardly ever an infection (only when I get truly sick) and I am battling a ton of dental issues. I maintain healthy hygiene but I still come out with several cavities. I'm going to take one of the posts suggestion and use the heating pad on my ear to see if that helps some, but as for the cavities.. They must be taken care of.

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  12. Yes, i have been looking and looking on line because no ENT seems to know about my ear pain. When i sleep on my side i have to make a little hole in my pillow with my fingers because the pressure becomes unbearable if I don't. I thought it was pressure from the paroid gland, but who knows? Itchy ear canal, where the MD accuses me of using Q tips (which I don't)! Most likely Sjogren's syndrome but no + DX yet either.

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  13. This is helpful! I have hashimito a auoimmune disorder that causes my.body to attack my thyroid but I have ringing and ear pain!! Gonna research more on Sjogrens

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  14. Ten years ago my first symptoms were excruciating eye pain and watering - causing me to stop on the motorway on one occasion. Extreme fatigue and then the ears started - the right on its own for about two years then the left joined in the fun! Hurting, blocked up, hearing loss. then painful feet and numb toes - now numbness and tingling over both legs. Then I started to have gum inflammation and my mouth is all dry and grotty. Anyway I have seen Neurologists, Opthalmologist, ENT,and rheumatologists and they each have dismissed it as Sensorineural hearing loss - just squirt olive oil in your ears; dry eyes - have some drops, oh try gel, how about this (I use three in 24 hours waking up twice a night to lubricate my eyes). Oh and the Rheumatologists? (three) have decided that I have arthritis (the simple tennis elbow type) and offer me steroid injections.
    Last week I found Sjogren's! I got rather emotional... Guess what I was 41 when it started and have just turned 50 now and had to give up my job and spend all day in bed in pain with constant fatigue. Now I have to decide who/how to tackle this... It must be embarrassing to be paid so much and so lousy at your job...
    I will be following your blog now!
    Caroline

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    1. It can be so frustrating. I've been dealing with sjogrens since the early 90's. Many ups and downs. I've done a lot of my own research because the current doctor seems to know little. I brought up the ear problem and the doctor wasn't familiar with it being a sjogrens issue and offered no help since no infection was present. I found that a few drops of warm olive oil really helps relieve the ear pain. I also have major problems with eye dryness, numbness and pain in fingers and toes, sometimes to the point of not being able to hold a cup of coffee or wear shoes, and fatigue. Still, doctors have little to offer aside from immune suppresents and pain meds. A friend suggested coconut oil so I've started using this on my very dry skin and also adding it to my diet. A recent article regarding dry, red eyes recommended 3000 mg fish oil, 2 1250 mg flaxseed oil, and 2 300 mg GLA Borage oil a day. Also stay away from night shade vegetables such as potatoes and tomatoes.
      Wishing you all the best.
      Mary

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  15. I have had severe ear aches for years. Left side is worse than the right. Usually the ear pain is accompanied by swelling of the lymph nodes and gland just under my ear, which leads to severe neck pain.
    My ENT told me that the Sjogren's is progressing, and there's nothing to be done about it. I do find that heat helps the swelling go down, which in turn helps the pain subside. It gets worse if I get sick with a virus or head cold of any sort.

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    1. I've had sjogren's for years. Ear pain started in one than the other ear this summer. My doctors had no remedy. However, I've started using a drop or two of warm coconut oil in the ear. This relieves the pain! Moist heat is also very helpful. (Coconut oil is also improving my cat's chronic ear infection.)

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    2. I was first diagnosed with Sjogren's just two years ago, but I've had just about all the symptoms mentioned by those in this blog for many years and just thought that my body had decided to break down in weird ways. I am currently dealing with a swollen red and painful ear and the parotid gland is highly swollen and painful. This popped up out of nowhere after I had a few particularly stressful days in a row.
      I've noticed that if I overdo it (not for normal people, but for me - too much activity or stress), I end up with something going off! It isn't always my ears, sometimes I wake up with a blood-red eyeball, or joints hurting so much that I don't want to get out of bed. I get what I call "bee stings" too - just out of nowhere it feels like I'm being drilled by a yellow jacket; a very painful deep pain that can strike anywhere - feet, legs, arms and even face or neck. I will sometimes get six or more in a week, and then they go away and I don't have any for six months! Can't find any correlation between them coming on and anything I eat, so I just don't know how to stop them.
      Then I get this strange hand and foot curling which is really weird, too. I found the name for it somewhere, but didn't write it down, so I need to look it up again. My hand or foot will go into a slow motion curl all on its own. I can't stop it or control it and it can be very painful, especially when its my foot. Like the bee stings, it comes and goes whenever - no apparent cause.
      I keep water by my bed as I have already awakened to such a dry mouth that it felt as if my tongue would crack and break. Like everything else, it comes and goes, with periods of weeks where my mouth seems perfectly normal and then I wake up unable to even croak due to the dryness of my mouth.
      Tingling and loss of feeling in my hands and arms, and sometimes my feet and lower legs is also another come and go symptom, although the tingling and numbness in my hands and arms seems to be getting worse. And I can definitely identify with the guy who said that he had to pull over on the roadside due to pain and watering of his eyes! Been there, done that!
      I am going to try the warm coconut oil for my ear. It is hurting so much right now. This is the worst it has ever swollen.
      It's pitiful, but good to know that I'm not imagining all of this!
      Thanks,
      Margie

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  16. Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants. gladys

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  20. I have had Sjogren's for 45 years, diagnosed 30 years ago. Over the past 10 years I have had the blocked ear feeling in my left ear, starting infrequently (singing) and slowly but surely increasing until early this past June it became 'permanent' with increased sensitivity to external noises and autophony, a most unpleasant sensation where you hear your own voice, breathing, chewing amplified in your own head. An ENT specialist diagnosed 'Eustachian tube disorder' and was totally uninterested in further investigation, just said he couldn't help. After intensive Internet research I believe I have patulous Eustachian tube where the tube is stuck in the open position. I can get it to go away for a few seconds if I bend over, it stops when I lie down (venous congestion of the mucous membranes apparently). A recent (late June) symposium on Utube did not list autoimmune diseases or Sjogren's as a possible cause but did list mucosal atrophy which sounds like a Sjogren's effect. I cannot find this described in any Sjogren's articles. Has anyone with Sjogren's had this symptom? I think I am resigned to having to deal with this for the rest of my life but feel pretty miserable and alone with it.

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  21. I have all the symptoms listed with the exception of ear pain. Going gluten free really helps and please watch this as it pertains to someone with autoimmune problems
    Fat Sick and Nearly Dead ( run a Google search and watch it!)

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  22. Nice Post. It’s really a very good article. I noticed all your important points. Thanks 
    Chronic Musculoskeletal Pain Treatments

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  23. You have done a brilliant job making sure that people understand where you are coming from. And let me tell you, I get it. Please post more updates to cure.
    Abdominal Pain Frankfort

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  24. Can't believe I stumbled upon this thread. I've got too many symptoms to list with Primary Sjogren's (systemic) and a newly diagnosed brain tumor (meningioma). Right now I'm sitting here with such pain and throbbing in my left ear that it's hard to concentrate. It's nothing new however as everything in and on my body is drying up at an accelerated pace. Two of my liver enzymes are off the chart and my vision is going fast. I can't get in to see a neurosurgeon for at least a month and I'm not sleeping well. I can't stand loud noises or jerky movement bright light - really very much light at all is difficult. Interestingly, my sister also has Primary Sjogren's (systemic) and she's in much, much better condition than I am and she is 14 years older. And so it goes . . .

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  25. Can't believe I stumbled upon this thread. I've got too many symptoms to list with Primary Sjogren's (systemic) and a newly diagnosed brain tumor (meningioma). Right now I'm sitting here with such pain and throbbing in my left ear that it's hard to concentrate. It's nothing new however as everything in and on my body is drying up at an accelerated pace. Two of my liver enzymes are off the chart and my vision is going fast. I can't get in to see a neurosurgeon for at least a month and I'm not sleeping well. I can't stand loud noises or jerky movement bright light - really very much light at all is difficult. Interestingly, my sister also has Primary Sjogren's (systemic) and she's in much, much better condition than I am and she is 14 years older. And so it goes . . .

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  26. I was starting to freak out & had a full-fledged meltdown in doctors office overwhelmed from the pain in my ears and feeling ignored & brushed aside as my primary just doesn't want to deal with it. It felt like I have been stabbed with an ice pick in my ears & pressurized at the same time. All they have to say is you seem depressed. Wouldn't you be? I am unable to work, fighting for SSI, and can't function most days lately due to the ear pain, insomnia and the 10,000 other symptoms. They sayif you dont like your doctors change.... Who's to say the next is going to know anymore. Exhausted! I keep hoping I'm going to wake up from this Multi-AutoImmune nightmare.

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  27. We get menieres...yep they will link it to autoiummune if they have not yet...I was having drop attacks prior to a real bad flare that took my kidneys too....5 year long flare. Every one needs to look up menieres...it is what you all are describing ....and I have it and sjorgrens and kidney failure etc etc ..but can't get stupid lupus diagnoses....I have drop attacks, tinnitus in both ears because I have bi-lateral menierers...valium is the only thing to be able to fix me...why I don't know but it and fluid works.

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  28. I am so glad to have read all of your comments as I have felt like I was losing my mind. I have Sjogrens dx I had an abscessed tooth that was pulled 10 weeks ago. This is about the 4th I've had to have pulled. Since then I've had ear pain and severe pressure feeling. Stabbing feeling about my eye. Swelling around my eye and severe dizziness. I went to my family dr twice and ophthalmologist an ENT AND THE ER. Two CT scans that show swelling in the tissues in my face but no one can tell me why. 6 rounds of antibiotics later and I was finally put on prednesone last week. Today is the first day that I have not been dizzy or ear pressure so prednesone must be working. My boss told me he thinks it might just be psychogenic. I wanted to punch him In the face and tell him that was not psychogenic it was for real. it is so frustrating when you feel so absolutely horrible and you feel like the people around you and coworkers just think your nuts. Ughhh. Thanks for allowing me to vent and being able to read of others who are feeling some of the same things bring me comfort.

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  29. It's bad enough to feel like horrible and maddening when our doctors & medical support say assine things like I think what you are describing is psychosomatic or other such nonsense. I am not one to wish ill will on anyone but these days I wish they could experience a fraction of what their patients feel, like a Claravoyaint. I wonder if it would improve the level of medical care or create a shortage. Its exhausting to feel like dath warmed over all the time. Its nice to find support here though.

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  30. Hi to all,
    I suffer with auto immune diseases, lupus,sjogrens,Hughes syndrome,fibromyalgia,hypothyroid & hypoparathyroidism.
    As you can see i have more than my fair share to cope with, but like many of you on here i also have the swollen glands and full painful ear.
    Drs and many consultants do not fully understand auto- immune disease making it hard for many of us to get a diagnosis. I have had MRI's showing lesions in the grey matter of my brain and now showing widespread small blood vessel changes.
    I am seen by a rheumatologist,endocrinologist,ENT and eye clinic, but still it is a battle because they do not understand sjogrens /lupus.

    I became so desperate i paid private to be seen at the London Lupus Centre It was their that i got my diagnosis. It was amazing they new straight away what was wrong with me and it was at this clinic they found i had Hughes syndrome.....sticky blood, hence my having a stroke !
    I had taken photo's of my sjogrens / lupus attacks with my mobile and got them developed to take with me.
    I made a folder up of previous blood tests some were positive but had been overlooked by many Gp's and consultants. I new what i was suffering from i just needed a diagnosis.

    It is not the patient failing the test's it is the test's failing us the patient !
    Because many of us have negative results we are told we do not have the condition, many of us with auto immune disease are what is known as seronegative.
    Many Dr's and consultants turn a blind eye to this because of the way they have been taught, if it does not show up in the blood then we don't have the disease.
    I feel like screaming hello wake up we are in 2016 and many of these illnesses were discovered a good few year's ago so why are you so ignorant of my
    condition's ? ? ?
    If an illness like lupus is not picked up on in the early years other types of illness then come into the picture example sjogren's this then confuses blood work as well as our Gp's.

    For those of you showing changes in the brain matter get antiphospholipid syndrome ( Hughes syndrome )ruled out, insist having test done at the hospital by a specialist who is knowledgeable of the condition.
    You will find lots of other suffer's and much needed info on sjogren's, lupus, hughes, fibromyalgia and thyroid issues on a site called Health Unlocked.
    The support you get from people just like yourself is second to none.

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  31. Hi to all,
    I suffer with auto immune diseases, lupus, sjogrens, Hughes syndrome, fibromyalgia, hypothyroid & hypoparathyroidism.
    As you can see i have more than my fair share to cope with, but like many of you on here i also have the swollen glands and full painful ear.
    Drs and many consultants do not fully understand auto- immune disease making it hard for many of us to get a diagnosis. I have had MRI's showing lesions in the grey matter of my brain and now showing widespread small blood vessel changes.
    I am seen by a rheumatologist,endocrinologist,ENT and eye clinic, but still it is a battle because they do not understand sjogrens /lupus.

    I became so desperate i paid private to be seen at the London Lupus Centre It was their that i got my diagnosis. It was amazing they new straight away what was wrong with me and it was at this clinic they found i had Hughes syndrome.....sticky blood, hence my having a stroke !
    I had taken photo's of my sjogrens / lupus attacks with my mobile and got them developed to take with me.
    I made a folder up of previous blood tests some were positive but had been overlooked by many Gp's and consultants. I new what i was suffering from i just needed a diagnosis.

    It is not the patient failing the test's it is the test's failing us the patient !
    Because many of us have negative results we are told we do not have the condition, many of us with auto immune disease are what is known as seronegative.
    Many Dr's and consultants turn a blind eye to this because of the way they have been taught, if it does not show up in the blood then we don't have the disease.
    I feel like screaming hello wake up we are in 2016 and many of these illnesses were discovered a good few year's ago so why are you so ignorant of my
    condition's ? ? ?
    If an illness like lupus is not picked up on in the early years other types of illness then come into the picture example sjogren's this then confuses blood work as well as our Gp's.

    For those of you showing changes in the brain matter get antiphospholipid syndrome ( Hughes syndrome )ruled out, insist having the test done at the hospital by a specialist who is knowledgeable of the condition.
    You will find lots of other suffer's and much needed info on sjogren's, lupus, hughes, fibromyalgia and thyroid issues on a site called Health Unlocked.
    The support you get from people just like yourself is second to none.

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    1. I'm so sorry you've had so much trouble getting doctors to listen to you. If you were in the US, I'd say go find a Mayo Clinic trained doctor, as they are thorough and fierce when it comes to finding the answers. I found a neurologist that has run numerous blood tests & even though most came back negative, she never gave up searching for an answer. She knows that Sjogren's patients can indeed have negative blood test results for many years, which is why it takes the average patient 7-10 yrs to get properly diagnosed. Crazy! She referred me to a rheumatologist, but kept running tests & did a lip biopsy (came back positive) because not knowing what I had was probably driving her crazy too. She is amazing & I hope you are able to find someone equally amazing, willing to work with you & be by your side, dealing with your many issues. My "sticky blood" antiphospholipid test did come back slightly high, so I need to get it retested in 8 weeks. Since my Dad had a major stroke & after reading your post, I will be sure to follow up on that! Good luck to you!

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  32. My severe ear pain was diagnosed as a trigeminal nerve issue & it made my neurologist look for into autoimmune reasons. She suspected Sjogren's due to other symptoms I have & ordered blood tests & a lip biopsy. The lip biopsy clearly came back as positive(3). I have an appt with a rhematologist next week & I'll let him sort it all out. Oh, and I was misdiagnosed with MS 7 years ago, spent 5 yrs on immune system altering MS meds (Tecfidera took my lymphocyte count down dangerously low), until my current neurologist and a third opinion doctor tossed that diagnosis 2 yrs ago. I suspected I didn't have MS since it never progressed & the MRIs remained the same yr after yr. It's been a wait & watch session for 2 yrs as symptoms of Sjogren's slowly started appearing. Always, always get a second opinion! I'm glad I finally did!

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  33. Any damage or unsettling influence to the delicate tear film of the eye causes a condition called “Sjogren’s Syndrome. There are some of Sjogren’s Syndrome Natural Remedies are mention below for the natural treatment of Sjogren’s Syndrome that are Eye Hygiene, Cucumber, Castor Oil, Cold Milk or Rose Water, Aloe Vera, Warm Water.

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  34. I have suffered from a chronic clogged feeling in my left ear for aboout 10 years and no ENT suggested anything but nasal sprays. Then the intermitant sharp pains in that same ear began and I began my search again. I finally found a good ENT and he suggested a device called "earpopper"- it's patented and amazing! You can google it and read up on it. I ordered it and it's like having my hearing back!

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