Sjogrens?

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Folks24
Folks24 Member Posts: 106
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Anyone heard about this or have been diagnosed with it?

I recently got a phone call from my specialist and I tested high on the antibodies for it sooo I get to see a Rheumotologist dr now too at the end of this month. I did a little seaching on the web about it and to be honest, I don't see where my symptoms match up with SJS ones. But with any medical conditions, symptoms are different for each individual.

I am just curious if anyone is dealing with SJS too? Thanks!

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  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #2
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    Sjogrens?
    I'm not sure about this. From what I've read, there really are no blood tests to determine any kind of salivary gland malfunction. Not saying it's not possible. But seems odd. I have heard before of people with "dry mouth", though never knew there could be a name attached to it.

    Saliva is important as it helps to protect your teeth. I don't know if you checked out the Merck Manual web page (definitely no sub for a doctor, but can at least start a conversation). Here is the page on Sjogrens:

    http://www.merck.com/mmhe/sec08/ch111/ch111a.html#sec08-ch111-ch111a-46a

    I'd be curious how this turns out.
  • Folks24
    Folks24 Member Posts: 106
    #3
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    hodgkoid2003 said:

    Sjogrens?
    I'm not sure about this. From what I've read, there really are no blood tests to determine any kind of salivary gland malfunction. Not saying it's not possible. But seems odd. I have heard before of people with "dry mouth", though never knew there could be a name attached to it.

    Saliva is important as it helps to protect your teeth. I don't know if you checked out the Merck Manual web page (definitely no sub for a doctor, but can at least start a conversation). Here is the page on Sjogrens:

    http://www.merck.com/mmhe/sec08/ch111/ch111a.html#sec08-ch111-ch111a-46a

    I'd be curious how this turns out.

    Sjogrens positive
    Well it is official that I have Sjogrens. It is an autoimmine dusease that attacks the moisture producing glands of the body. It can in severe cases attack the joints and muscles too.

    I was told it is progressive but the rate of progression and symptoms patients experience are all individualized. Seems we are each "special". I am still getting monitored alot. So far for me it is just the blood#s, teeth cavity problems, dry eyes and some fatigue. Don't know what to expect but I beleve most everyone on this website is in the same dilemma. You just go day by day.
  • beejlouise
    beejlouise Member Posts: 1
    #4
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    Folks24 said:

    Sjogrens positive
    Well it is official that I have Sjogrens. It is an autoimmine dusease that attacks the moisture producing glands of the body. It can in severe cases attack the joints and muscles too.

    I was told it is progressive but the rate of progression and symptoms patients experience are all individualized. Seems we are each "special". I am still getting monitored alot. So far for me it is just the blood#s, teeth cavity problems, dry eyes and some fatigue. Don't know what to expect but I beleve most everyone on this website is in the same dilemma. You just go day by day.

    Sjogrens
    Hi-I was diagnosed w/sjogrens when I was 20-jeez, that's 33 years ago! So, yes, I know a little something about SS!! When I was dx it was described as an autoimmune disorder affecting postmenopausal women. Anyway, I started with inflammed parotid glands-they would actually get infected, so I needed prednisone and an antibiotic. It took awhile before my eyes got involved. I now have "profoundly" dry eyes; I really love Lacrisert-it has been a lifesaver since they discovered it in 1983. And, the rad for Hodgkins (last year) surely did not help my dry mouth--oh Lordy----it's a desert in there! Biotene to the rescue. Yes, we all put one foot in front of the other each day, and keep moving forward. There are a bunch of treatments-if you have any questions, I probably can answer them. I have had my tear ducts cauterized (you haven't lived until someone puts hot needles in your eyes! ;) )I am kidding-you don't feel a thing, but it's pretty freaky!! BUT-it has helped immensely! And, nobody even really knows I have ss-despite cancer, and ss--I just finished nursing school last week!! Ta-da!! I have to pass the NCLEX, and get a job--but I am now a graduate nurse, almost a registered nurse!!

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