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Am I going crazy?😀

Posted , 6 users are following.

chris08587
chris08587

Diagnosed with ss a year ago after a hospital visit with pancreas issues. I am one of the very few to be diagnosed right away. Smart Cleveland clinic intern. So I do not know as much how it would feel to not be taken seriously about symptoms. When this horrible illness came and set up house in my body about a year ago, I could hardly walk, used a wheelchair and cane, got off the toilet like a gymnast. 2 hands! Always. Guess I’m just venting. I can’t imagine how much it would suck for those of you that have had horrible symptoms and not be taken seriously. Currently I feel very ill/ unwell every day. My eyes are gritty sand traps, my toungue is a red, scalloped mess....I am on plaquinil. I don’t know why I am writing, but I guess to just say hello to my ss friends. I can’t imagine you all having such symptoms for so many years and not be taken seriously. I think I am in the 1% that I was diagnosed with Sjögren s right away. I wish you all the best. I just have been feeling so badly I had to share.

2 likes, 4 replies

4 Replies

  • maureen05275
    maureen05275 chris08587

    Posted

    Dear Chris

    I hope others have a few good tips for you re medications etc.  It took 15 years for my diagnosis but that was so long ago you were probably not born. I just wanted to say I know how you feel, I know the 'so badly' bit when you are so very, very miserable and life is one big scary, painful, grief-filled place to be in.   I feel for you and with you.  Know that we care about you.  Feel loved.  I hope this message helps you get through even this one day feeling a little bit better.  I know the Patient community is a virtual life-line for me.

    Maureen xx 

  • diane03050
    diane03050 chris08587

    Posted

    TY U really appreciate YOU COMMENT. I WISH I COULD HAVE GOTTEN DAGNOSISED WITH SOMETHING BY NOW. I HAVE AL SYMPTOMS OF SS Sorry about caps. My hands are in Charlie horses so bad. So I didn't look up. Anyway I hope 6 Drs make a decision now. I should know by end of March Either MS or SS. I have POLYMYOIYIS that was diagnosed many years ago. With a muscle biopsy. I wish my 6 drs could be together and say you have, whatever. I really appreciate your comment Hope you feel better soon God Bless 

  • christine63572
    christine63572 chris08587

    Posted

    Hi Chris sorry you have this horrible illness there is lots of support out there here in uk there are fb support groups which l am on and we all fire our questions and usually there is someone that has similar symptoms. Im on plaquenil 200mg daily and havent had any side affects. Take care x
  • lindasf
    lindasf chris08587

    Posted

    I was diagnosed SS and low white blood cell after 5 months of symptoms. It was first thought I had sinuses infection, I saw 2 ENT, 1 allergiest and finally last week my family care doctor ordered blood tests for quite few diseases including SS. I count my blessing that I was diagnosed so fast after reading this forum.

    I have terrible dry mouth, hard to swallow food, lost senses of smell and taste.

    I am going to see a Rheumatologist to be evaluated and for treatments to control symptoms

    Linda

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