Severe Dry mouth disorder

Posted , 6 users are following.

I have dry mouth and was told there's no cure for it. It's altered my life to the point of severe depression and anxiety. Is anyone going through this.

I've gone to every dr. Out here I had blood work done to see if I have sjorgren's but it's horrible.

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  • Posted

    Hi. I am waiting for my Results concerning whether I have got Sjogrens Syndrome. I had to see a Consultant at the Dental Hospital, I have seen seven or eight doctors since October, not one of them mentioned Sjogrens. My dentist was the one that got things going by referring me to the Dental Hospital. I know it's Horrible at times. Have you got Dry Eyes ? I hope this helps. You are not on your own

    • Posted

      Hi Yes I have some Saliva, but i get through four or five bottles of water a day. I also suck sugar free sweets. and my doctor and the Consultant at the Hospital have given me pastilles and false Saliva making sprays. The Best thing I can say is go to your Dentist or Doctor. My dentist said to me anything to do with your mouth is go to her. . Hope this helps. Have you got Dry Eyes?

  • Posted

    hi there, it was once thought I had Sogren's but it turned out I had Behcet's syndrome. Diagnosed 11 years ago. I just wanted to point out....there is no absolute blood test for Sjogren's. It is diagnosed on history mainly. I think it is worth seeing an oral immunologist or other specialist in this area. That's where my trek began a few years back. Not sure where you are based otherwise could suggest someone for you. A contact with Vasculitis UK might be a way forward. They are such a good support group. They deal with all forms of Vasculitis awareness, of which Sjogren's is one form. 

    • Posted

      what is Behcet's syndrome?  I had an Imunization Dr. do some lab work and it came back negative for Sjogrens.  will my saliva ever come back?

      Is there a cure for this, I think it's my meds and if it is and I stop staking them will i go back to normal?

      Thank you

    • Posted

      Hi, don't know who the doc was who tested you for Sjogren's. There is no absolute blood test for it. 

      Behcet's and Sjogren's are both auto immune disorders. They are both forms of vasculitis. There is a support group called Vasculitis UK who would be worth chatting to. They are very good. They could answer more about Sjogren's. 

      There is no cure for either Behcet's or Sjogren's but they are treatable  and with the right kind of care you can get good treatment. I don't think that not taking meds will help you to be honest. I would stick with your medication and ask for a referral to an oral immunologist. I know of one at Guys Hospital in London but my knowledge of the rest of the county isn't so good. You could ask advice from Vasculitis UK. 

  • Posted

    Estrela I am having the same problem.  So I've taken medicine for depression and anxiety which might be the rason I got the dry mouth to begin with.  I look on google all of the time hoping that someone will come up with a cure to help us.  People tell me that I should just keep drinking water.  Also take biotene.  They are not in our shoes.  And unless that happens to them they will not know the agony we go through day after day.  My doctor told me it wasn't life threatening--I'd like to see him see how this feels.  Have tried whatever I can find out there.  Id I ever do find something I promise you that I will post it on here as quick as a wink.  

    • Posted

      I agree with you Iris. I think you should be asking your doctor to send you to a specialist who can rule out Sjogren's syndrome. It's a very unpleasant and distressing disease and lots of people who suffer from it suffer depression too. If you google it there will be a help group but also the people at Vasculitis UK are absolutely brilliant and may be able to offer advice on remedies for dry mouth. I would definitely give them a ring. 

    • Posted

      Thank you Iris I will too. This is life changing. And nobody knows anything. With so much medicine advance you would think someone whould know better.
    • Posted

      Are you able to function ? Cause I can't. I lost my job, got depression /anxiety etc...am I the only one ?

    • Posted

      hi, how were you tested? I wonder who you see for this. It is most often diagnosed on history rather than blood work. x
  • Posted

    it's just that there is no test as such for Sjogren's. I am quite confused about how it was ruled out. It is the same with Behcet's disease. There is no blood test for that either. It is most often diagnosed by a specialist based on your history. x

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