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OMG no wonder I'm stressed

Posted , 3 users are following.

jacqueline00180
jacqueline00180

Hi as I wrote previously in April about dry eyes and mouth and nose I have no tears or sweat vaginal problems having bladder installations at present  I have bowel and swollowing  problems oestioarthritis  nerve problems and the rhumatologist I saw was not interested and said I didn't have Sjögren.  

Yesterday I had an app with an eye specialist who has confirmed secondary Sjögren's so at present a little bit fed up putting it mildley I saw a lovely specialist who was interested I think that's the difference and although other symptoms had nothing to do with my eye specialist he put the whole thing together has written to my GP to get me further investigations.

He said my imminune system is attacking my secretional glands.

Even more confused and stressed.

jakki x

 

0 likes, 12 replies

12 Replies

  • gayle19455
    gayle19455 jacqueline00180

    Posted

    Hi Jacqueline. I know how hard it is to get the right doctor. Hopefully now you can get some relief. It aeems no-one can really understand except another one with Sjogrens. I have to take 1/2 a Norco pain pill every day to just get by. It was my eye doctor also who caught my Sjogrens. I hope all gets better for you.
    • jacqueline00180
      jacqueline00180 gayle19455

      Posted

      Thank you gayle for your replying you are right I do understand when I read Sjögren's forums the great deal of stress that you go through I think if you got a consultant that is on the ball it could half the pain stress and struggles people go through with this is a horrible syndrome.

      I saw a rhumatologist that dismissed everything I said interrupted me when I asked any questions, he said I need to see why my eyes were dry hence the app with eye  specialist who diagnosed sjogrens, gave me some new stuff and made a huge difference to the point I can drive again without the blurry vision.

      All I can say to those struggling to get a diagnosis keep going back and don't give up even if you feel you are not getting anywhere we are all different and while blood test are positive for most people there are those that are negative and can still have it like me I feel for you gayle I really do take care and thank you Jakki xx

       

  • aitarg35939
    aitarg35939 jacqueline00180

    Posted

    It's probably autocorrect, but I'm dying to know: what is a bladder installation, because if they're doing bladder replacements somewhere, I'm on the next plane ,,, she said, having had to get up & go 4 times in 30 minutes while not having a UTI.

    • jacqueline00180
      jacqueline00180 aitarg35939

      Posted

      Hi aitarg a bladder installation is where I have something called  iAluRil administered into the bladder.

      I suffer with urgency, intersistanal cystitis I get a pain in the bladder urinary infections it works directly on the bladder to form a protective barrier between the bladder lining and the irritant compounds found in the urine, it's designed to restore the bladders protective coating reliving these symptoms 

      It's designed to replace the lining of the bladder that has been damaged I had them once a week for a month now fortnightly then monthly it takes about two years of doing this.  

      I Have never been able to eat fruit or alcohol or anything acidy, since having this I have been able to eat fruit I can't drink alcohol as me mouth is dry. 

    • jacqueline00180
      jacqueline00180

      Posted

      I am under a urologist/gyne look up on the internet I was dreading it but I have instil gel in first I don't feel it it's put directly in the bladder you hold it for an hour I thought they were crazy when they suggested this and how on earth is this going to work I have felt such a difference I refused this several  years ago which I regret very much.

      In a healthy bladder there is a natural barrier that protects the bladder lining from urine when it's damaged urine comes into contact causing Tissue damage I hope this has explained a bladder installations.

       

    • aitarg35939
      aitarg35939 jacqueline00180

      Posted

      You explained it beautifully, Jacqueline, thank you. Your bladder problems are far worse than mine - you have my empathy.
  • jnecamp1978
    jnecamp1978 jacqueline00180

    Posted

    Your white blood cells (these are for infection) are attacking the lacrimal glands, destryoing them. Our immune system defends our body for infection, so when it begins to attack a specific system, it causes tissues of that system to break down. 
    • jacqueline00180
      jacqueline00180 jnecamp1978

      Posted

      hi jnecamp

      Thank you for replying you explained that very well thank you I had a cystitis then later had all these symptoms appear and had them ever since I keep waiting for it all to go away ha one can hope thank you again Jakki x

    • jnecamp1978
      jnecamp1978 jacqueline00180

      Posted

      No problem Jacqueline!! I am a registered nurse, so I am glad to help. What are they giving you for the infection? What did they give you for the cystitis. Yes, you had an infection for sure. Any disease ending in -itis means infection
    • jacqueline00180
      jacqueline00180 jnecamp1978

      Posted

      Hi jnecamp 

      I have had amoxicillin and cephalexin for cystitis  think that's how it's spelt and I take one nightly and have been for nearly 22 years as well hence trying the bladder instillations, allergic to trimethoprim,  just like to say I don't take a nightly antibiotic anymore and had no infections so far not even having the instillations sorry I didn't reply last night Jakki x

    • jacqueline00180
      jacqueline00180 jnecamp1978

      Posted

      Hi jnecamp

      It has been of huge benefit to me my instillations and they  has been extended  a little longer  on the fortnightly ones due to having Sjögren's it's early days for me but although not perfect I can feel the difference apparently it's an expensive procedure so won't continue if not helping you will know in the first month if this helps anyone suffering these crippling bladder disorder ask your GP to refere you xx I know anouther referral I was sceptical about this but I know it is helping I can feel it x I know it does not work on some patients but if you suffer like me it has to be worth a try it will be the monthly ones I will know if has worked for sure when your bladder is exposed longer without the treatment x

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