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  • Unexpected diagnosis

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    Old 06-17-2008, 10:09 PM   #1
    kteachal
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    Unexpected diagnosis

    Unexpected Diagnosis

    Hi... I am new to the boards, and new to Sjogrens too. I went to the doctor in late April because I was having the symptoms of Raynauds. I had some blood work done, and was referred to a rheumatologist. After some more tests I was diagnosed with Raynauds and Sjogrens in June.

    I've, of course, researched both of the syndromes, but am kind of unsure about what to expect from the future. I've not had any major health issues- just the sensitivity to cold with Raynauds and the dry mouth/eyes with Sjogrens.

    I wanted to ask someone experienced with Sjogrens what their experience has been. Does the syndrome get progressively worse? Right now the rheumie says it is just a nuisance to me- which is true. All of my symptoms are easily treated. However, he did mention that in the future that there is a possibility of developing other auto-immune diseases.

    So, what should I be on the lookout for? Anything is appreciated! Thank you!

     
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    Old 06-18-2008, 01:06 PM   #2
    Sjogrensgirl
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    Re: Unexpected diagnosis

    From the reading I've done it would seem the progression and severity of our symptoms vary from person to person. There are typical hallmark symptoms: dry mouth, dry eyes, and fatigue. However that is really generalizing.

    I personally have dryness issues all over. Pretty much anywhere my body is suppose to produce moisture it does an insufficient job at doing so. I use prescription eye drops, sleep with a humidifier, no fan. For dry mouth I use Biotene products (mouthwash, toothpaste, artificial saliva) which have no alcohol and are specifically made for people with dry mouth. Dry mouth issues make cavities more of an issue, so I see the dentist every 6 months. I have a lower energy level than the normal person, so I try to schedule most of my tasks for the earlier part of the day. I experience joint pain every day, the level varies. I take a anti-inflammatory pill for the joint paint (Celebrex). For me, my knees and hands hurt the worst. And just recently I've started experiencing neuropathy, which often goes hand in hand with autoimmune diseases that cause inflammatory issues. Neuropathy causes numbness and sensory issues.

    I hope all the above info isn't too much of an overload. Some people only experience some of this. We don't know for sure why some symptoms stay dormant while others surface. There is no rhyme or reason to it. I would say the best thing you can do is educate yourself on the disease. I bought some books, like the "Sjogren's Survival Guide". There is also a foundation: Sjogren's Syndrome Foundation, which I recommend becoming a member of. They will send you pamphlets with the latest studies and helpful articles. You can do a web search for their website.

    Oh and your comment on Sjogren's leading to other autoimmune diseases, yes that is true it can. I have Primary Sjogren's and Raynaurds. Although many people I talk to have Sjogren's with something like RA or Lupus. I don't know that there is any way to predict if someone will or won't develop a secondary disease. I will say that reducing your stress and learning what your body's limitations are will become very important.

    Hope that helps.

     
    Old 07-22-2008, 10:36 AM   #3
    trikirodger
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    Re: Unexpected diagnosis

    Quote:
    Originally Posted by kteachal View Post
    Unexpected Diagnosis

    Hi... I am new to the boards, and new to Sjogrens too. I went to the doctor in late April because I was having the symptoms of Raynauds. I had some blood work done, and was referred to a rheumatologist. After some more tests I was diagnosed with Raynauds and Sjogrens in June.

    I've, of course, researched both of the syndromes, but am kind of unsure about what to expect from the future. I've not had any major health issues- just the sensitivity to cold with Raynauds and the dry mouth/eyes with Sjogrens.

    I wanted to ask someone experienced with Sjogrens what their experience has been. Does the syndrome get progressively worse? Right now the rheumie says it is just a nuisance to me- which is true. All of my symptoms are easily treated. However, he did mention that in the future that there is a possibility of developing other auto-immune diseases.

    So, what should I be on the lookout for? Anything is appreciated! Thank you!
    In response to your recent diagnosis, I too have been diagnosed with Sjogren's. I was diagnosed about 7 years ago. It seems I have had every possible related condition. I have extreme joint pain, fatigue, rauynuards, kidney disease, high blood pressure, teeth and mouth problems, eye problems, rashes everywhere, the list is endless. My advise to you is: first, get active. You may never have all the problems that can develope with Sjogren's but you may. I am a fitness instructor and I can assure you it is "the" main reason I am still able to keep moving. Every single day I have extreme pain and sometimes I feel so sick it takes everything I can do to get going, but the more I move the better I feel. You have to learn this early because (if) that pain gets so severe and you haven't conditioned yourself to exercise you probably will not be able to do it. I'm almost 52 and I still teach 14 classes a week. Yoga has been the most beneficial. I'm in no why saying it's easy, it's NOT EASY. But without the exercise I feel certain that I would be close to bedridden today. Second, make sure your research all medications prescribed by your doctor(s). Know what the side effects are so you can stay on top of any adverse reactions should you have any. Sometimes you find that a medications is not helping. Talk to your doctor about it so that you can stop taking it. The more medications the most side effects. In some cases the medication helps so much that it outweighs the side effects associated with it. Medications can bring both blessings and problems, so be wise. Educate yourself but also listen to your body. It will tell more than anything else can. Third: take responsibilty for yourself in all things. The doctors have many patients, you have one....you. Get copies of all reports, labs, etc. so you can keep your own health records. I compare my reports all the time to see how I'm doing. If you don't know what some of the information on the reports mean, just go on the web and type it in. You can find out almost anything you need to know. I hope this helps you. Have a positive attitude, expect the best but prepare yourself to accept and deal with what ever comes. Good luck to you and all of us living with our own personal situations.

     
    Old 08-30-2008, 08:50 PM   #4
    VELVET121
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    Re: Unexpected diagnosis

    Are you pleased with your doctor in atlanta? Im looking for a rhematologist that specializes in sjogrens, thanks in advance.

     
    Old 08-31-2008, 04:10 PM   #5
    trikirodger
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    Re: Unexpected diagnosis

    Quote:
    Originally Posted by VELVET121 View Post
    Are you pleased with your doctor in atlanta? Im looking for a rhematologist that specializes in sjogrens, thanks in advance.
    I am happy with my rhematologist. It seems that I visit other specialist more often based on the symptoms I'm experiencing at the time. He is considered one of the best on the south side. His name is Alan Gottlieb. He is very direct and too the point, but I guess I would rather have a Dr. that gets the job done over one that is more personable but does not "take care of business". I would recommend him, he's thorough, and very focused on each situation. It's hard for a rhemetologist, because it seems there is really so little they can do beside diagnose and then help with pain mangement. I noticed you live in columbus. My mom lived in columbus and had to make the atlanta trek to get good medical care. Good luck in your decision. A good doctor is worth any amount of driving. If you were going to come all the way to Atlanta, Emory would be the best for dr's specializing in sjogrens.

    Last edited by trikirodger; 08-31-2008 at 04:12 PM. Reason: left something out

     
    Old 09-02-2008, 09:27 PM   #6
    pieplate1
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    Re: Unexpected diagnosis

    hi, I too am diagnosised with raynauds, and have symptoms of soijrens, but all my blood
    work is normal. curious if any of yours was abnormal. Also started on low dose prednisone, temporarily, and first time I feel normal (almost) since Christmas. Also switching blood pressure medication. I have had chemo, no one seems to know for sure, just treating my symptoms via rheumatologist.
    pieplate

     
    Old 09-04-2008, 12:51 PM   #7
    trikirodger
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    Re: Unexpected diagnosis

    There really is no defining blood work to test for sjogren's. They are looking at ANA, antinuclear antibodies, and the rheumatoid factor. It's like the raynuard's, it usually goes hand and hand with sjogren's, but is not a definant. Your blood work could come back "normal" forever and you can still have sjogrens. My ANA and RF are normal but usually have something out of range. Anemia is typical with sjogrens. Now my renal panal is coming back looking pretty sad. The symptoms of dryness is the hallmark of sjogrens. It's not ordinary dryness, it's excessive. The body is I believe about 78% or more water, so when your moisture production system is under attack, anything and everything can happen. Ask for copies of your blood work so you can follow any changes and make note of anything that is just a fraction of being out of range and then keep an eye on those particuliar areas. Also, if you are feeling better after starting prednisone, that usually indicates that there is inflamation, which is also an indicator of sjogrens. All the best..

    Last edited by trikirodger; 09-04-2008 at 12:56 PM. Reason: left out a comment

     
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