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CountAllVotes Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-23-09 10:48 AM
Original message
Sjogren's syndrome
Edited on Fri Oct-23-09 11:09 AM by CountAllVotes
Great, just what I need. ANOTHER auto-immune disease/illness. :( :puke:

Does anyone else have this problem?

>>Symptoms

Sjogren's syndrome affects everyone differently. You may not have every symptom listed here, and you may have only minor problems with those you do have. The symptoms may seem worse at some times than at others.

In people with no other health problems, the most common early symptom is the onset of severe dry mouth and eyes.

In people with rheumatoid arthritis or related conditions, dry eyes and mouth develop more slowly. In this case, Sjogren's may be difficult to diagnose.

Symptoms may include:

Dry mouth

The mouth normally contains saliva, which aids chewing and swallowing. In people with Sjogren's syndrome, the amount of saliva is much less. This makes chewing, swallowing, and speaking difficult. It may also cause a decreased sense of taste.

Dry eyes

Your eyes may feel dry, "gritty," or "sandy." They you sleep. Your eyes may be more sensitive to sunlight. If not properly treated, Sjogren's syndrome can lead to ulcers of the cornea (the clear covering of the eyeball). On rare occasions, this can cause blindness.

Swollen salivary glands

There are three set of glands that produce saliva. They're located under your tongue, in the cheeks in front of your ears, and in the back of your mouth. They may feel swollen and tender (see figure 2). This may occur along with a fever. This affects about one-half of people with the disorder.

Dental cavities

This is a common problem that results from a dry mouth. Saliva fights bacteria and defends against cavities. Because you have decreased saliva, your teeth may develop cavities more easily.
Dry nose, throat, and lungs

This may make your throat feel dry and tickly. You may have a dry cough, hoarseness, a decreased sense of smell, and nosebleeds. It can also lead to pneumonia, bronchitis, and ear problems.

Dryness of the vagina

This can cause painful intercourse for women with Sjogren's syndrome.

Fatigue

Fatigue is a common complaint. You may get easily exhausted and feel tired and worn out.

Other problems

Sjogren's syndrome can affect other parts of the body, such as blood vessels, the nervous system, muscles, skin, and other organs. This can lead to muscle weakness, confusion and memory problems, dry skin, and feelings of numbness and tingling.

Sjogren's syndrome can also affect the liver and pancreas. When it does, there is a greater chance for developing cancer of the lymph tissue. Although this is unusual, it is one reason why medical exams and continued follow-up are important.

More on it here:

http://www.orthop.washington.edu/uw/sjogrenssyndrome/tabID__3376/ItemID__55/PageID__4/Articles/Default.aspx

I've been trying to figure out why food isn't very tasty anymore. I've lost about 40 lbs. Soon there won't be a whole lot left of the once hefty me. Hmph to those weight loss freaks out there. Get sick enough and YOU WILL LOSE WEIGHT!

If anyone knows what to do about this other than buy eye drops and/or use Restasis eye drops (which is not only costly but controversial), let me know!

Thanks everyone.

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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-23-09 11:51 AM
Response to Original message
1. see the doc
did you have a blood test that told you this? what else do you have?

i have the antibody, but not the symptoms.
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CountAllVotes Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-23-09 12:07 PM
Response to Reply #1
2. I was dx'd by an ophthalmologist
Edited on Fri Oct-23-09 12:08 PM by CountAllVotes
he put some sort of strip in my eye and it turned bright orange.

Also been having the dry mouth and other dry symptoms for quite some time which includes trouble swallowing and speaking along with the tingling, arthritic pain (and then some!), fatigue, etc.

I'm going to my internist next week to ask what else can be done about this if anything.

It seems that I have all of the symptoms described above, all of them. :(

Thank you for your reply.

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Warpy Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Oct-24-09 12:30 AM
Response to Reply #2
5. They used to confirm it by a salivary gland biopsy
but now there are some very specific blood tests they use to confirm it.

The test you had was just a tear test to see if you were producing adequate moisture. The classic triad is dry eye, dry mouth, and rheumatoid arthritis.

The main problem with Sjogren's is that the dry mouth leads to a lot of severe dental problems. Most long standing Sjogren's patients are edentulous pretty early in life, heroics not stalling the need for dentures for very long. Meticulous hygiene is necessary, you'll want to keep your own teeth as long as you can. There is a medication that stimulates saliva production and might help preserve the teeth.

Most people can get by with eye drops for their eyes. There is a medication that will stimulate tear production, too. People with extremely dry eyes might need their tear ducts plugged to keep what little moisture they have in their eyes from running out. You'll want to keep your eyes moist. Corneal ulceration used to blind people before the drops were developed. The drops are over the counter.

The rest of the treatment is systemic, with the usual array of drugs that are used for the other collagen vascular diseases and dealing with other problems when and if they pop up.

The main site is http://www.sjogrens.org/ The patient newsletter is called "Moisture Seekers" and is at their site.

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CountAllVotes Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-26-09 11:17 AM
Response to Reply #5
6. thanks Warpy
Edited on Mon Oct-26-09 11:41 AM by CountAllVotes
I'll ask my M.D. about this tomorrow when I go. Let's hope that the opthalmologist was wrong!!!!

Dental problems: Teeth are ok but gums are not that great no matter how much time/effort I put into keeping them up. Sh*t.



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cpompilo Donating Member (125 posts) Send PM | Profile | Ignore Fri Oct-23-09 05:22 PM
Response to Original message
3. It sounds like a horrible disease. Some people with Sjogren's
are finding symptom relief with Low Dose Naltrexone. See www.LowDoseNaltrexone.org
LDN is being used successfully to treat all kinds of autoimmune diseases. I am currently using it for Crohn's Disease and am much improved. I have been using LDN for 4 months now. I am also on the Specific Carbohydrate Diet (5 years).

Here is a LDN Health Group that can answer any of your questions: http://health.groups.yahoo.com/group/lowdosenaltrexone/

Hope you can find relief.
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CountAllVotes Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-23-09 07:33 PM
Response to Reply #3
4. been there done that
spent about $500.00 on this hoax. You shouldn't go around recommending LDN to people that are sick and may be using other substances that you are unaware of. They can become very sick! :eyes: :eyes: :eyes:

Thanks for the good wishes in any event.
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