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Yup. It's sjogrens

Posted , 11 users are following.

ally82777
ally82777

Hi, I'm back I have just been diagnosed with sjogrens and bronchiectasis. I live in a small village in Liverpool does anyone know of any support groups in the Liverpool area. And advice over work. I love my job at the moment the pain is too unbearable to go back. I'm still signed off. I've heard stress can cause symptoms to flare up. Do I go back to work or leave and concentrate on my health. Advice please xx💕💕😬😂😰😪🌸

1 like, 64 replies

64 Replies

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  • babycham
    babycham ally82777

    Posted

    Forgot meant to say is the other one you mention bronchitis?
    • frustrated61
      frustrated61 babycham

      Posted

      HI babycham

      If you don't mind, what did the lesions look like on your lip?  I just want to see if perhaps I have the same thing or it's something different.  It's all good. lol

    • babycham
      babycham frustrated61

      Posted

      Hi, no I didn't have anything on the inside mouth before biopsy. Have you showed them to a doctor?
    • frustrated61
      frustrated61 babycham

      Posted

      Yes, I saw the doctor yesterday and she said if it got any bigger, to go in and have it checked again.  Said it looked like a cyst and sometimes when you mess with a cyst you mess with what's in the cyst.  So, I'll keep an eye on it and see how things go..thank you  for your response.

      frustrated

  • Sue1247
    Sue1247 ally82777

    Posted

    I've just had my eyes plugged as I have virtually no tears.  Feels better already.  The worst but for me was having my submandibular salivary gland removed recently.  Nit a pleasant operation and I have a 6" scar on my neck.  Apart from that I feel fine.  I also have Graves and SLE.  
    • frustrated61
      frustrated61 Sue1247

      Posted

      omg,Sue, I had my  eyes plugged...the bottom wasn't painful but when they did the top, geeesh, the shots to numb was the most painful I've felt!  They had to numb that area by finding the little nerves in the lids.

      Sue, did your doc mention anything about getting the prose lenses?

      If not, the treatment towards getting lenses is quite extensive but so worth it!   The lenses are HUGE and cover almost to the end of the white part of the eye.  But, and a big But at that, you not only see 20/20 you get fluid to the eye affording to rule out blindness. 

      Charles...did any doctor say anything about sarcoidosis?  Just asking because  your symptoms are very similar to mine.   Today I'm feeling like I have the flu..coughing hard and bringing up gunk...vomiting that woke me up! I've never woke up with vomit in my mouth having to run (which is a feat in itself) and get to the proper place to vomit.            My husband takes me to all my appts and he's a great advocate for me, if he wasn't, I'd have nothing but worse happen to me her..my other daughter has one child and works fulltime as well and she'd be the back up if my husband couldn't take me.

      Anyway, I just got out of the hospital ending up w/o a dx except they suspect it was from sjorgens or sarcoidosos.  Did anyone feel the doctors just use those diseases as their lack of wanting to really find out what caused me to break down in a store; which caused the store to call EMS. I was so nauseated, sweating profusely and pain in my chest area.  And upon going to the hospital, they did one test after another and all they came up with is it was probably sojgrens or sarcoid....maybe it is either one. I signed out from the hospital and two days later, I'm extremely tired, coughing up phlegm and pain all over my body...unable to breathe well...I'm thinking flu?

      Ally, you sound like a positive person and I thank you for opening this forum...I know, talking for myself, I'm in desparate need of something positive.  With that said, thank all of you for letting go and expressing everything because with the two problems I''m dealing with is hard enough for my family so talking about it to them just isn't going to happen. Know what  I mean?

      frustrated61  my="" age="">>

  • charles79548
    charles79548 ally82777

    Posted

    Yes a doctor checked for sarcoidosis but that test was negative. When all my symtoms started several years ago it took me a year and a half and 25 doctors to get my Sjogrens Syndrome diagnosis.  These symtoms with the breathing difficulty started a year ago and I have seen seven doctors already with no luck on a diagnosis or real relief of the breathing difficulty. I go to a new Pulmatolist in three days for her to exam me and see if she can help me.
    • frustrated61
      frustrated61 charles79548

      Posted

      Hi Charles,

      How are you doing?  Have you been able to see the Pulmonologist since your last post?  If so, did he refer you to a Rheumatologist?  Usually the final doc you see is a Rheumi as they deal with the inflammation of the sarcoid/sjogrens.

      Hope to hear from you

      Frustrated

    • frustrated61
      frustrated61

      Posted

      Hi again, Charles, how have you been doing lately?  I'm scheduled to see a new pulmonologist and rheumi as well.  I just don't like to "break" in new doctors because everything I've been dealing with for over 10 yrs now,they want to be updated in an hour session.  That's exhausting.  I'm sending my files ahead before my appts so they can proof through them and if they don't, I'm going to have to say something.  As we with sjogrens/sarcoidosis, know that energy isn't in abundance! 

      Hope you are well,

      Frustrated

  • Sue1247
    Sue1247 ally82777

    Posted

    No I don't know anything about prose lenses.   I just live from day to day until something crops up that I have to deal with.  There are few things I can't do, and if I can't it's due to old age rather than Sjogrens  I don't worry about it, eat a healthy diet and keep moving.  To be honest I find talking (or writing) about it doesn't help me either.  I'd rather forget than keep going over it. 
    • frustrated61
      frustrated61 Sue1247

      Posted

      Well, I wish you all the luck.  If ever you're interested in finding out about the prose lens...let me know.

      Good Luck

      frustrated

       

    • ally82777
      ally82777 frustrated61

      Posted

      I am interested in anything that will help ease me from this horrible disease xxx
    • frustrated61
      frustrated61 Sue1247

      Posted

      Hi Sue ~

      I believe I was the one with the "prose lenses".  I noted that you don't want to talk abou this.  I'm sorry you're in a hard place presently and I hope things do get better.

      Good Luck!

      Frustrated

  • ally82777
    ally82777

    Posted

    Thank you to everyone who has sent me a response. 8 weeks ago I had a wonderful life I then turned into some sort of cabbage for a while. Frustrated by drs lack of respect or knowledge ,, feeling like a fraud. 

    I am determined to get my life back and yup it may be hard but good day bad day !!!! My body has always been a source of amazement , if I can grow a child I can learn enough about this disease to ensure I can have the best out of a life that has changed. I don't want my children to feel like my carers. I live in a large house over 3 floors. I'm thinking of selling and buying that bungalow !! Haha please please all keep in touch. It has help me greatly 😘😘😘😘😘

    • babycham
      babycham ally82777

      Posted

      Hi I have to wait another 2weeks now   to get some results  
    • frustrated61
      frustrated61 babycham

      Posted

      Hi babycham ~

      Have you received any results as of now?  I know it's been 2 mths since the last post but it's always good to keep up with one another to help support any issues that arise from these diseases.

      Warmly

      Frustrated

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