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Has anyone else had the fluid in their ears crystal use/dry up..with Sjorens ?

Posted , 6 users are following.

christine26761
christine26761

I would be really really keen to hear if this has happened to anyone else, also what are their symptoms  and what/if meds help...thank you all..in advance..:-) xx Australia"

 

1 like, 12 replies

12 Replies

  • lily65668
    lily65668 christine26761

    Posted

    Yes, probably, is all I can say. I've had episodes of vertigo ever since I was a child, which is a symptom of fluid in inner ear crystallising. I've also been prone to thick, sticky secretions in general all my life - catarrh, sinusitis etc. However, I didn't get symptoms of Sjogren's till I was 50 (or a diagnosis till I was 60, but that's par for the course!) I suspect there may be a connection.
    • christine26761
      christine26761 lily65668

      Posted

      Thanks heaps Lily...I have had this 24/7 for 11 years now...was diagnose with  Sjogrens a couple of years before Fibro.....the Nuerologist said after many tests that  it was just the fluid in my middle ear had CRYSTALISED...and it would go as quick as it come..mmm 10 yearsdown  the track I'm still waiting for it to correct...I was thinking that it maybe from the Sjogrens, the Nuero really didn't talk about that...I had already been diagnosed with SS 3 years before...I am going to put it to my local GP.....hoping he knows a bit about it- trouble is usually they don't....grr..just sooo sick of being soooo imbalanced and dizzy- walking stiick to walker even sometimes a wheelchair ..thanks sooo much fir the reply..I really appreciate it...be blessed..:-) xx Aus..
    • frustrated61
      frustrated61 christine26761

      Posted

      Christine ~

      I was told the same with sarcoidosis that it will go as quickly as it came..here it is 11 yrs later and it's spreading.  It hasn't taken a break, ever!  Sjogrens as well.  While I was dx'd in 2012, I had the same exact symptoms years before I was dx'd.  It hasn't taken a back seat and I'm guessing it won't anytime soon.

      Good luck to you!

      Frustrated

    • christine26761
      christine26761 frustrated61

      Posted

      Thanks for the reply..frustrated...really appreciate it,  stay strong...if possible..:-) xx
  • karen_06361
    karen_06361 christine26761

    Posted

    Also I would like to add that I'm yet to obtain a diagnosis, so far my doc thinks I have fibromyalgia, I am not so sure... I think it's Sjogrens.

    I have all the symptoms, dry eyes, dry mouth, skin, scalp psoriasis, achy joints, fatigue, the ear problem, plus I have developed a lump on the back of my head in the last two days which I'm pretty sure is an occipital lymph gland, and today I have developed tenderness in the groin area which I think is also a swollen lymph node.

    My life hasn't been much fun this past two months which is when it all steadily developed. sad

    • christine26761
      christine26761 karen_06361

      Posted

      Thanks very much Jaren, I'm going to talk about to my doc..hope life gets better fir you precious...your symptoms certainly sound like SS..stay positive and strong..be blessed..:-) xxx
    • mermaid1962
      mermaid1962 karen_06361

      Posted

      Hello Karen.

      Sorry to hear about your suffering. How long have you had the problems as it sounds very much like Sjogren's? I had issues for almost 2 years and was constantly dismissed and given various medications which merely masked the symptoms for a while. I then decided to change my doctor. I also had my optician write to my doctor and things really improved from then on. I had a lip biopsy and several tests that gave a positive confirmation of Sjogren's.

      I do have problems with my glands, especially in neck and groin, and although they are not painful, they are very uncomfortable and it feels like strings being pulled very tightly. That said, I am not too concerned as I have been informed that it is quite common in Sjogren's and once the Hydroxychloroquine kicks in, the glands should return to normal.

      I would report any swelling in the glands, particularly the neck and head. You should then be referred for an ultrasound, which happened in my case. 

      Try keeping a journal, noting down every symptom, however small.

      I do feel for you as another one of the Sjogren's symptoms is chronic fatigue and that is awful as you feel as if you have no energy at all, just want to sleep all day.

      Do let me know how you get on and keep pushing for answers as your body is telling you something is wrong and you need to find out what that "something" is.

      Good luck, Karen and stay strong.

      Angela.

  • frustrated61
    frustrated61 christine26761

    Posted

    Hi Christine ~

    I do have crystalizing in my ears.  It's like one day they are "normal" then the next, they are full of crystals. I'm not sure what causes that but I have an appt with my ENT doc and I'm going to ask that question.  I'll post what she has to say about it.  She's well versed in sarcoidosis and sjogrens!

    Good luck

    Frustrated

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