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#1 marys

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Posted 26 March 2008 - 05:46 AM

Hi everyone,

My name is Mary and I have been peeking around this message board and everyone ha alot of info.so I thought I would introduce myself and hopefully find some answers and maybe answer some questions.

I was diagnosed in 2001 with MCTD (CREST) not understanding it all and probably never will.I have a positive ANA and RNP.and as of Monday positive SS-A was *26 normal is -<20but SS-B was *6. So if one is positive what does it mean its secondary not primary? I really have alot of questions but I will checkout the forum first.But I'm concerned about Sjorgren's now what to expect.I seemy optomoligist on monday for the tear test??not sure what this is next week for a field test.I noticed really about 3 years ago with a change in my eyes but just thought it had to do with MCTD until no more tears.other then the glands what other symptoms?

Thanks everyone,
Mary

#2 Karenlee

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Posted 26 March 2008 - 07:00 AM

Hello Mary and welcome to the forum. I am fairly new to the world of CREST and have not had my blood work results yet (I am due to find out next Wed), so I am sorry that I cannot answer your questions as of yet, but I still would like to welcome you and wish you the best.

Karen

#3 marys

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Posted 26 March 2008 - 08:46 AM

Thank you for the welcome Karen.But you know with the BRAIN FOG thing I didn't even remember introducing myself before.But I still hope someone can tell me about SS-A secondary??

Thanks,
Mary

#4 janey

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Posted 26 March 2008 - 09:51 AM

Mary,
Welcome to the ISN forums. Sounds like you have a lot going on and are still going through the "discovery stage". Plus, with everything you have going on, it's hard to understand it all. Please do not hesitate to ask your doctors questions. Many doctors appreciate patients that want to know, unfortunately, some don't.

In reference to you questions about SS-A and SS-B, there is a short explanation on our Sjogren's page under antibodies.
"SS-A(Ro) is found in 60% to 70% of patients with Sjögren's syndrome and 30% to 40% of patients with SLE. SS-B(La) is found in 50% to 60% of Sjögren's syndrome and 10% to 15% of SLE....Patients who are ANA positive and who have SS-A but not SS-B are very likely to have nephritis." By this, the presence or absence of these antibodies does NOT determine primary or secondary SS, but please verify this with your doctor.

I've never had a dry eye test before, but apparently, the Schirmer's test is commonly use. Here is the information on the Schirmer's test from MedlinePlus.

I also have MCTD but my overlap is systemic scleroderma and polymyositis. MCTD is usually an overlap of two or more connective tissue diseases. Plus check out our page on CTD and MCTD to find out more.

Let us know how your tests turn out. Hope things go well.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Sweet

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Posted 28 March 2008 - 05:36 AM

Hi Mary!

Welcome to the sclero forums. I'm so glad you are here, but sorry it's due to your diagnosis. Janey provided great links, I hope they are helpful to you.

Again, welcome to our family.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 marys

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Posted 10 April 2008 - 09:46 AM

Thanks everyone for responding.i was wondering if you can explain to me your symptoms.I know everything is dry but do you have tears that roll down or eyes just water?and your mouth dry taste or hard to swollow?
If SS-A is 26 positive but B is 6 do you know what it means.And RNP is positive?This is all very confusing to me would love it if some could say it in my ENGLISH LOL not medically terms.
Hope everyone is feeling good.Take care

Thanks again,
Mary

#7 Snowbird

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Posted 10 April 2008 - 02:48 PM

Hi Mary

Wish I could help you but I can't answer your questions on that either (I'm still fairly new to this as well). I hope you stay with us and let us know how you make out with your appointments.
Sending good wishes your way!

#8 mando621

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Posted 11 April 2008 - 04:36 AM

As to question about eye test. Schirmers test, the doctor puts a 15mm by 3-4mm slip of tissue paper under your lower eyelids for 5 minutes. Just the edge of the paper, with the remaining part hanging out of your eye. This can be done with or without a optical anesthetic. They really want it without an anesthetic because if you have moisture in your eyes it will definitely show up! The idea is to see if your eyes produce enough moisture to wet the slip of paper. Normal eyes will flood with tears and wet the entire slip in no time at all. My eyes are extremely dry and I only had 4mm of wetness from the right eye and 6mm of tears on the left. The slip of paper actually stuck to my right eye and it had to be tugged to get out.

If you have under 8mm of tear production, you are considered to have dry eyes. My blood tests didn't show up with any SS-A or SS-B, but from some research I did, 60 - 70% of patients get the blood markers, while 30-40% can have the disorder without having positive blood markers. I'm in this category. I haven't been officially diagnosed with Sjogren's because I won't submit to a lip biopsy - the gold standard for diagnosis in the US.

The test isn't fun, but it is manageable. It hurts like you have something in your eye (which you do) but you know it is going to end soon.

My diagnosis based on this test is Keratoconjunctivitis - dry eyes. I also have dry mouth with burning mouth all the time. I use Restasis drops every day and it makes a huge difference. I also have over the counter eye moisture drops for those times when I need more. I am getting corneal pitting, but not too bad yet.

Good luck with the test. Sjogren's as my ex-rheumatologist says is just a nuisance (HA what does someone who doesn't know what it feels like really know).

If it is only a nuisance, why did my life insurance company put a rider on my policy that my claim for benefits would be void if I had Sjogren's?

Mando

#9 truman

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Posted 11 April 2008 - 07:29 AM

Hi Mary:

Glad to see you found your way here. We all offer our opinions, symptoms, tears, laughter and yes.......even recipes. You couldn't find a more welcome website (and I use that term loosely, because it is a family) of members who share your disease. We also share with the husbands, wives, and significant others who come here to learn and share.

As you become accustomed to this site, you will see the circle of friends grow larger and stronger.

Welcome again.......
Tru

It is what it is...........

#10 peanut

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Posted 11 April 2008 - 09:52 AM

Mando,
You can take something for your dry mouth, meds like salagen and evoxac work really well. I didn't have the blood marker for sjogrens but I definitely do have the dry eyes and mouth that are associated with it, so I just say I have sjogrens. Afterall, my rheumatologist does treat me accordingly.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#11 lizzie

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Posted 11 April 2008 - 11:02 AM

Hi peanut- just wondering how things are going in Chicago