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    Old 11-18-2003, 07:11 AM   #1
    hilery79
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    Question sjogren's syndrome symptoms

    Anyone who has been diagnosed with Sjogren's Syndrome, can you please tell me all of your symptoms. My Dr. suspects I might have this.
    Thank you~

     
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    Old 11-19-2003, 12:57 PM   #2
    AngelicBrat
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    Hello Hilery,

    Simply put, Sjogrens (Pronounced Show-grens) Syndrome is a disorder that includes the symptoms of dry eyes, dry mouth, joint pain. In more severe cases, it can affect the lining of the lungs, causing them to become dry and predisposes someone to a kind of lung disease. It can be treated with anti-malarial drugs such as Plaquenil, but in less severe cases it is generally treated symptomatically. I have heard of people that have there tear ducts plugged, have salivary gland stimulators in the mouth etc. It is very symptomatic but I have heard that Plaquenil works wonders when the joints as well as the dryness occurs. What are your symptoms? Your doctor can test you for Sjogrens Syndrome using the Shirmer's blot test, where they put a piece of special paper in the eye to check the moisture. Also, there is a blood test called the Anti-Ro which is for Sjogrens Syndrome. Sjogrens can occur on its own, but also in conjunction with Lupus or other Autoimmune diseases. I hope this helps

    ~Angelic

     
    Old 11-19-2003, 08:41 PM   #3
    hilery79
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    Hi,
    Thanks so much for your reply.
    My symptoms include: dry eyes, swollen salivary glands, dry mouth sometimes, and I also have been having pain in my pelvic joint area(this just started recently).
    My salivary gland(parotid) has been swollen for a few weeks now. It is really painful and my dr. said there isn't much they can do about it.
    Also, I was dx'd with Hashimoto's before I had my thyroidectomy in July. I know this puts me at risk for developing other autoimmune disorders.

    Thanks again~
    hilery

    Last edited by hilery79; 11-19-2003 at 08:42 PM.

     
    Old 11-20-2003, 07:22 AM   #4
    KandiKane
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    Smile Re: sjogren's syndrome symptoms

    My doctor suspects that I have Sjogren's. I have dry eyes and dry mouth and very painful bouts of sciatica. Hashimoto's is also suspected. So far, all of the testing I've had done has been negative. I am currently searching for a spcecialist and hopefully some answers.

     
    Old 11-21-2003, 08:58 PM   #5
    debinaz
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    Re: sjogren's syndrome symptoms

    Hilery - I was diagnosed with a Sjogren's-like Syndrome this past March. I wasn't typical: high ANA, heavy chest pain, shortness of breath, achy hands/fingers upon waking, flare-ups (sometimes with legs so weak I can't walk, numbness and tingling, cognitive changes, memory difficulties, fatigue, dry eyes, dry mouth, constant anxiety, constant hunger, and, the worst part, seizures. Still trying to determine if the seizures are part of another condition. My 12th dr. diagnosed it with a lip biopsy. I did not have SSA nor SSB, but you don't need to have it to have Sjogren's.

    I take Plaquenil (brand only, there is a difference with this medication's generic form), and to the surprise of my wonderful dr., 4 days later, most of my symptoms were gone! Amazing - that's very unusual after only 4 days! He also has me on Moducare, which boosts your immune system, your T cells, and that is amazing - I usually get sinusitis 4-5 times per year at least. I am just not sick, ever - I am so healthy.

    You should join the SS foundation. It's at Sjogrens.***. They sell a wonderful book (it's green) called the Sjogren's Syndrome survival guide. It's my favorite, out of my whole huge library now! A really good site is [url]www.sjsworld.org[/url]. You should join a local Sjogren's support group - it has been wonderful for me. The only other thing I would say: you need rest, more rest than you ever needed before. If you push yourself, your body will push back, so you learn not to push, how to pace yourself. It's ok, I now can really smell the roses.

    Frequently, you can have more than 1 autoimmune condition - they cluster. I also have fibrositis and interstitial cystitis.

    Find a wonderful dr - it took me to dr. #12 to get there, and he is the best dr. in the world. He says he loves treating me.

    Let me know if I can help you. I have learned so much (both literally and figuratively) on this journey. Wishing you the best.

    Debbie

     
    Old 11-21-2003, 09:24 PM   #6
    debinaz
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    Re: sjogren's syndrome symptoms

    Hilery - One more thing: Another frequently symptomn is lots of pins & needles/numbness and tingling.

    Debbie

     
    Old 11-21-2003, 09:32 PM   #7
    debinaz
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    Re: sjogren's syndrome symptoms

    See, you can see my memory issues already! I had to send you 3 e-mails to list everything I intended to
    I remember one more symptom - very frequent chest rash. You mentioned a swollen gland - I had one in my neck, it's gone now, but I hated it...

    Again, I wish you well...

     
    Old 11-22-2003, 08:20 AM   #8
    hilery79
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    Re: sjogren's syndrome symptoms

    debinaz,
    Thanks so much for your replys.
    Yes, I have been having lots of tingling. It's weird because it is mainly on my face, but I also have it in my hands and feet. I also have shortness of breath, chest pressure, tachycardia and dizziness. I have had most of these symptoms since May. And, I did have a rash on my chest about a month ago.
    It's so frusterating to have all of these symptoms and not know for sure what the cause is. I am currently searching for a new dr.

    Thanks again,
    hilery

     
    Old 11-22-2003, 07:40 PM   #9
    debinaz
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    Re: sjogren's syndrome symptoms

    Hi Hilery - Your dr. says it's likely Sjogren's - and I have something Sjogren's-like. Sure, you can find a new dr., but what are you looking for? You already got a diagnosis. Sjogren's (and many other autoimmune conditions) can cause every single symptom that you suffer from. Not sure why you're still looking. Are you just not sure his diagnosis is correct? It makes sense to get a 2nd opinion if you're not sure, but it certainly sounds like that's what it is.

    I went to 12 doctors (over 1 1/2 years), even before we got to something autoimmune. I knew something was wrong, had more and more symptoms, and then finally my first seizure. Everything I suffer from is autoimmune, and we're trying to connect the seizures.

    As I said, I think it would help you to read those books on Sjogren's - to help you understand it and help you know how to handle it. There will be good days and there will be not so good days.

    Ask around for a top rheumatologist. My dr. was great because he finally diagnosed me (after all of the other clueless doctors), but he is phenomenal because of how he listens to me and how he treats my condition.

    Debbie

     
    Old 11-23-2003, 11:28 AM   #10
    hilery79
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    Re: sjogren's syndrome symptoms

    Quote:
    Originally Posted by debinaz
    Hi Hilery - Your dr. says it's likely Sjogren's - and I have something Sjogren's-like. Sure, you can find a new dr., but what are you looking for? You already got a diagnosis. Sjogren's (and many other autoimmune conditions) can cause every single symptom that you suffer from. Not sure why you're still looking. Are you just not sure his diagnosis is correct? It makes sense to get a 2nd opinion if you're not sure, but it certainly sounds like that's what it is.

    I went to 12 doctors (over 1 1/2 years), even before we got to something autoimmune. I knew something was wrong, had more and more symptoms, and then finally my first seizure. Everything I suffer from is autoimmune, and we're trying to connect the seizures.

    As I said, I think it would help you to read those books on Sjogren's - to help you understand it and help you know how to handle it. There will be good days and there will be not so good days.

    Ask around for a top rheumatologist. My dr. was great because he finally diagnosed me (after all of the other clueless doctors), but he is phenomenal because of how he listens to me and how he treats my condition.

    Debbie
    Yes, I'm still not sure this is the cause of all my problems. I know that it is very likely, but I haven't been "officially" diagnosed, yet. My dr. just said that he thought Sjogren's could very well be the cause. He also keeps bringing up the possibility that anxiety might be causing a lot of my symptoms. I don't know, I just wish I had a definate diagnosis.
    My most frusterating symptom right now is a very swollen parotid gland. It is extremly painful and nothing seems to help the pain. The entire right side of my face is so swollen. My mouth is usually dry, but every now and then I get this burst of a salty taste in my mouth on the right side.

    I'm going to be getting that book like you recommended to help me better understand this disease.

    Thanks so much for your help
    hilery

     
    Old 11-23-2003, 06:32 PM   #11
    debinaz
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    Re: sjogren's syndrome symptoms

    Hi Hilery - Didn't mean to sound like I was jumping at you!! Believe me, I have travelled the same road you are. I don't have the SSA nor SSB antibodies (that some Sjogren's patients have) - so, the dr. said it is likely Sjogren's, and we can treat it as such, and prescribe medication, but to be sure, we can do the lip biopsy (nothing shows, by the way). That way, I wouldn't just be taking medication, not knowing if we treating something that was really something else! So, I said definitely, do the biopsy, we need to know. I'm not going to just start taking medication, and not know if it's treating the right condition or not. And my biopsy showed the lymphocetic (sp?) inflammation that is a hallmark of Sjogren's. By the way, all he removed was 3 salivary glands from my lower lip (you have over 1000). So, maybe that's what you should do. If you get a low score (0 is no inflammation, 4 is the worst), then you keep looking for some other diagnosis. But the test is supposed to be the best way to diagnose Sjogren's. Make sure you trust the dr., and that he has done many lip biopsies. It sounds like maybe you want to find a new dr. anyway.

    One more question: Is your ANA high (and a positive titer)? Mine is 640:1. It used to be 160:1 for years, which is also too high. That is a strong indicator of an autoimmune condition.

    And I had one of those swollen glands that went away when it was ready to go away. The biggest help to me, besides the plaquenil, has been the moducare, which boosts my immune system. It may help the gland swelling go away, who knows. I think I told you how I never get sick now, even with the flu rampant everywhere right now..

    So, in closing, I understand you wanting to get an answer, I still need one on the seizures, but I'm not sure if you realize that regardless of whether you have Sjogren's, lupus, or something else autoimmune, they usually use the same medications to treat it. I'm not a dr., so I shouldn't be telling you it sounds like Sjogren's, but you are experiencing every single symptom that I was. By the way, they thought it was anxiety with me at first, and they put me on prozac and xanax at first. I knew anxiety wasn't the root of the problem, rather an effect of it. Even the psychiatrist (they made me see for the prozac) said this is definitely medical, not psychological. By the way, that anxiety (constant feeling) left after 4 days on the plaquenil, that is the truth. Trust your instincts, you know yourself.

    Keep in touch.

    Debbie

     
    Old 11-24-2003, 06:58 AM   #12
    Carlaschill
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    Re: sjogren's syndrome symptoms

    Quote:
    Originally Posted by hilery79
    Anyone who has been diagnosed with Sjogren's Syndrome, can you please tell me all of your symptoms. My Dr. suspects I might have this.
    Thank you~
    Try this site It helped me alot.[url]http://www.sjsworld.org/[/url]
    hope this can help you find some answers,
    Carla

     
    Old 12-02-2003, 01:43 PM   #13
    Mara
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    Re: sjogren's syndrome symptoms

    Sjogrens is treated symptomatically.

    Last edited by Gemi; 02-09-2004 at 11:31 AM.

     
    Old 01-17-2004, 05:03 PM   #14
    seeker13
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    Re: sjogren's syndrome symptoms

    Did plequenil help you with the dryness?

     
    Old 04-30-2004, 06:43 PM   #15
    sandrae
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    Re: sjogren's syndrome symptoms

    KandiKane,
    Did youever get diagnosed? What happened?

     
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