Sjogren's But Normal

[Sophia3]

I did not want to hijack the other Sjogren's so excuse my own.

Ok I am confused. MANY times over the years I've had initial screening test for autoimmune stuff (SED rate & ANA that I remember off top of my head) NORMAL.

Then my ANS endo doc ordered those and a boatload of sicca syndrome tests for Sjogren's. My on going cotton mouth of MANY years (blamed on ANS stuff) has worsened and since my iridotomy surgery for NARROW ANGLES, dry eyes and now blepharitis.

I never EVER had dry eyes until this surgery to save me from another problem. SO only part of the out of state Sjogren's test came back. So do I have primary or secondary SJogren's? Primary is quite rare and most all times there's another autoimmune illness going on so I wait. My ANS doc emailed me blood work results and phone number and two rheumy's to choose from. One man and woman. Sadly I got the female as she's easier to see (3 weeks) but is Indian but I am assured not a THICK ACCENT.

So now we go starting over again although this office HAS my recent blood work already due to in same extended health group.

Normal ssDNA test is 0-19. Mine is 219. So for sure Sjogren's.

BUT..could this mean I also have LUPUS as it's rare to have "Normal" ANA & SED rate for Sjogren's...but we dysautonomiacs ain't normal.

I realize few post on this topic but i have much joint pain and RA ruled out over the years...so osteo arthritis we guess or some non specific ritis.

I'm TICKED the rest of the blood work never came in but my doc has no control over this....we already had to redraw one test as it got shipped THAWED & needed to be frozen.

Except for gravity issues not being address. Sjogren's alone has MANY symptoms I have..add Lupus and it's a big Bingo (except for the gravity thing)

How many here have had normal pre screening tests for auto immune junk ONLy to find out you did indeed have such an illness.

My ANS Dr has been pretty repetitive at screening for this over the last 13 years and checks my thyroid a lot for Hashimotos and other stuff (all NORMAL) even tho my thyroid often enlarges and then gets smaller again..we even did an ultrasound a couple years ago...normal.

Between recent eye issues,my surgery was not successful so they want to do iridoplasty Narrow Angles and Plateau iris (rare combo, surprise!!) Ive had it with waiting. they fry your eye like bacon in plasty and NO guarantee except it's VERY PAINFUL and 98% get iritis afteward. No thanks.

thanks

Soph

[iheartcats]

They still don't know about me for sure (will anyone ever)? But I might have Sjogren's. It is rare...but rare is not impossible...to have it alone.

Some symptoms just stay mild (dryness/aches/pains). I don't seem to have many issues related to Sjogren's, really...unless the muscle aches/pains I get are that and not POTS but those are on and off.

Good luck and let us know what you find out. Would love to hear it!

[Sophia3]

Hey

Let me clarify. I KNOW it's possible to have Sjogren's alone (Primary) but the fact my ANA and SED rate tests were "Normal" and the ssDNA positive is what has me surprised. Usually if you have Sjogren's one of the pre screening tests were also positive (ANA & SED) sigh. Thus Lupus is often looked into...I've felt horrible and disabled for years but my fatigue stinks even for me.

Good luck with what you find out, too. I've had HORRIBLE COTTON mouth for over a decade...and last few months dry nose...then the eye surgery that trigger sudden dry eye issues. Oh and this surgery is not supposed to even have any real recovery time and no 'reports' of dry eye side effects.

Anyway, I know Sjs can be alone..it's the pre testing NORMAL that's confusing.

Sorry if I was fuzzy in that info earlier.

[Noreen]

I did not want to hijack the other Sjogren's so excuse my own.

Soph

Soph-

I hear ya where dealing with waiting for autoimmune dx is concerned. Years can turn into decades. . 6 tubes of blood every 6 to 8 weeks; 24 tubes every 3 to 4 months - it is just too much fun - and let's not talk about whether lab tests are accurate.

Getting the SLE confirmatory diagnosis is hard - the rheumy's are constrained by guidelines (I posted criteria in answering post under Sunlight). Sjogren's has enough symptoms and problems and is actually quite a serious condition.

All the rheumatological autoimmune diseases tend to blur in my opinion. I told my doctor years ago when I was flaring all the time and on high dose pred, that it seemed like my immune system was like a radio station that would pick up symptoms from surrounding stations (other autoimmune diseases) until it settled back down and focused on the RA.

Eye pain is excruciating. I'm sure you already use the gel at night and always have your drops to hand. Hugs and good wishes going out to you. let us know how your make out.

Noreen

Here's a link to Sjogren's NIAMS page fyi - http://www.niams.nih.gov/Health_Info/Sjogr...t.asp#diagnosed

[Sophia3]

Thanks Reen. I've already read scans of stuff on Sjs but appreciate the link...I've been HEAVY user of Chapstick for years..but I've also needed DDAVP and so between that need and ANS junk. so many things blur. but since eye surgery both the surgeon suggested I get this test as has my optometrist but he's seen me at least 15 times in last few months and my eyes varie in dryness.

Also Reed, if you want to reply, just hit the REPLY button. Tough for me to re read everything in duplicate and saves space for this site.

It's TOUGH to come here and read a long posts so when folks QUOTE everybody it's tedious.

[iheartcats]

I have had ANA tests come back normal and then 'positive' - they tend to do them every six months or so and they vary. So I guess I see how it can take years for an RX. I was told to just 'watch for symptoms.'

I have very dry skin, am using my lip stuff all the time (and heavily at night) and very dry mouth. I always thought that was just normal and then blamed the dry mouth on POTS. Maybe it's not? But I can't get a definitive answer.

The eye thing sounds so annoying! I feel for you. During one of my eye exams (I only go every 2 or 3 years) the doctor said my eyes were 'very dry' and I guess I hadn't noticed/blamed that on allergies. Do you always 'feel' the dryness, if that makes sense? I have a hard time even understanding what to look for!

I don't see my Rheumy until June but I'll try to ask for more details about Sjoergen's.

At least we aren't alone, there's that, right?

[Sophia3]

wow, I can relate. I've been carrying a water bottle with me since 1993! it was just annoying back then,...now it's very dry & my tongue hurts sometimes.

I could not AVOID seeing an eye doc due to the dry eye (unless you got OTC moisture drops) My cornea was dry but you can also get bad infections from severely dry eyes. Gritty sensation. THEN after the surgery dry eyes for 6 weeks or so, came the bleparitis (which is also a sign that autoimmune system is over reacting)

I am just STUNNED this laser iridotomy surgery triggered the eye problems. But when you think they blew tiny little holes in my iris (which is a muscle!) that has to screw up the Ph balance of the eyes but there is very little DETAILED info no this surgery. Few have severely Narrow Angles-Plateau iris issues. But a hot laser played a Starwars game in my eye and I am PERSONALLY convinced it change my eyes forever or at least months. They had hoped to open up the angle a bit as pressures are fine but now the plateau iris is a concern....Sugery was dec 28 & 30 (for each eye) My eye strain/pain/dryness is just now calming down that I do NOT spend HALF my days with eyes covered with warm or cold compresses. This is almost May.

So now, I just have the dry eye and grit issue and have to be careful.

i would love to own stock on the original Chapstick! it's the only thing that helps and recently I am using it more than ever when used to, DDAVP, to help my dehydration issues would help a bit.

yea, this waiting around is a drag. I've just now been able to read online a LOT in the past week and have searched and read on Sjs & Lupus. Many fuzzy blurry over lapping symptoms that sound like ANS stuff...*sigh*

[tinkerbella]

Hi, I hope it's OK to join in and share here...

How dry I am...I just had the 6 tubes drawn last night again after years and years of being watched and years ago I refused treatment. I would only be sicker on the meds for sjogren's. I asked back then what the treatment for lupus was and it was the same. I was so drug sensitive and my pc and I decided not to take them back then. Last night, we already know I have a high ana, that she'll most likely put me on a low does of plaquenil if I'm not allergic to something that she is testing me for that is in it. She would add neurontion for all the nerve pain, and I didn't like the salagen the last time as it made me so sick. We would start with that.

I have plugs in my tear ducts and reatasis eye drops. eyes hurt so bad I want to rip them out. She said now they call is sicca syndrome when someone has all the symptoms and just doesn't have all the positive test results. I most likely don't have RA but OA also...but I'm dry, hurt, ache, and if I was a car someone would have traded me in a long time ago. Oh yeah, my husband did...he picked a newer model 15 years... wonder if he got a rebate with that deal? lol We must laugh! ; 0

We must keep each other posted with updates. I wish you the best of care. I wish us all well by tomorrow morning, each and every one of us. Amen.

HUGS,

Bellamia~

[Sophia3]

Thanks Bella. Anybody with experience with this stuff is helpful!

So sorry about your eye deal. I use the expensive preservative free drops several times a day as I am leary about the Restasis ad can't afford them. Also supplement with eye drop samples my optometrist gives me but he doesn't want me using them more than 4 times a day due to chemicals in them...but they are soothing. One weekend before a follow up appt to my eye surgeon I used eye drops every 15 minutes!

Do you use cold compresses! They help a lot but you have to use them a lot!! I literally did "vision fasts". no tv no reading/laptop for 24-48 hrs. My optometrist told me to do that months ago and that helped. It's a drag but I like talk radio (local is good and i do sports...try to avoid the hate talk radio popular today!?) I found the visual fasts to help and I still did frequent eye drops but have cut back lately. Spent half day with eyes covered in cool compresses (warm ones when I developed blepharitis..so now switch back and forth)

I've heard about Plaquenil (old malaria drug) Also pilocarpain (sp?) which I've had in eye drop form in an emergency situation to lower pressure. Pilo comes in oral forms and some get great AID for the dry mouth from it. but it has side effects, mostly diarrhea or stomach upset but willing to try...it's cheap (least eye drops are)

Have you taken neurontin? I'm tempted to try it for pain ... but read it's in capsule form and lowest dose is 100 mg

[Noreen]

I apologize for quoting your post. I have hand fatigue issues and sometimes it is very difficult to use keyboard to delete prior post.

[Noreen]

Bella-

Are you having luck with the Restasis? I have had silicone plugs for years and tried Restasis 6 yrs ago for four months or so. It didn't seem to do anything for me and I stopped it. Lately I have had to do a lot of the optic gel in addition to the usual preservative drops. I am seeing my neuro-opthalmologist next week and wondering whether I should mention it.

Your input is much appreciated.

Noreen

[tinkerbella]

Sophia,

Has you doc ever offered the plugs to you? I had a zillion pairs over the years. My insurance covers the restasis. I use warm compresses several times a day. I also like the warmer my daughter made me with rice and cloves in it warmed up slightly and the warmth and weight of it feels good. i think I'm going to ask her to make a little eye pillow for me to use on just my eyes.

I just can't afford the natural tears. I was buying them like crazy... I also bought sunglasses readers in the dollar section at target that everyone thought I paid designer price. I use them to use my laptop as they are not full dark, but take the stress off my eyes so I'm able to watch TV on my laptop and use it. I make sure I stay out of the way of fans as that is one of the worse offenders as the warm weather approaches. Also, as I those double whammy hot flashes come on I make sure that my mini fan that I wear in the summer stays away from the eyes.... lol Oh I was taking Flax seed oil for my eyes till 2 weeks ago when my cholesterol and triglycerides came back off the charts. Flax seed oil makes the triglycerides that are high higher, but are good for the joints and eyes.

Neurontin I have taken in the past before for a very short time. The Neuro at the time made me stop as he believed I was getting worse. It made me drunk like. Now my doc last night said people can take very low does and very high doses 1400mg but, makes dry mouth worse. I could also take lycira , but she told me it makes people gain weight.

I need to go back and pull up some old records as I remember I starting having a very low HR and the neuro made a note of that... Hummmmm....

Things that make you Hummmmmmmmm....

; ) I hope some of this was helpful to you .

I will post more when I'm more awake.

Blessings~

Bellamia~

[tinkerbella]

Bella-

Are you having luck with the Restasis? I have had silicone plugs for years and tried Restasis 6 yrs ago for four months or so. It didn't seem to do anything for me and I stopped it. Lately I have had to do a lot of the optic gel in addition to the usual preservative drops. I am seeing my neuro-opthalmologist next week and wondering whether I should mention it.

Your input is much appreciated.

Noreen

Noreen,

Yes, I'm sure I have rubbed the plugs out as I got them about 8 weeks ago. Then I started the Restasis. The first few days I felt eye pain and after that it went away. The Restasis says will not MAKE TEARS with plugs in. My eyes were so damaged that the doc told me my eyes would have never been able to have taken the drops first. I needed the plugs to heal my eyes first.

If your insurance will cover them I would go for them and at least give them a try.

Bellamia

[Noreen]

What kind of plugs did you get that you were able to rub them out? The silicone ones are still there after all these years. The last prescription drops I got ended up being more expensive on my plan than going preservative free and doing the ointment a couple times a day so that is how I have been going.

Thanks for your input. I'll see what she says.

[tinkerbella]

Reen,

I believe they are they silicone ones. with allergies I'm an eye rubber and they have been know to come right out. we'll see when I go back again in June. The last I dr put them in a smaller size and they hurt. It wasn't my regular doc as I couldn't get into the city. They were gone when I got back to my regular doc he had to put in another pair.

Never heard of the gel. who makes it and is it a script or over the counter?

I also found since getting hydrated 2 times a week it is such a great help. I'm not constantly licking my lips anymore. ; )

I hope this helps I had a great list of tips. If I find it I'll post it... : ) Have a great day!

bellamia~

[Noreen]

Never heard of the gel. who makes it and is it a script or over the counter?

bellamia~

Bella-

The gel or nighttime ointment (depends on brand) is OTC. It comes in a small tube and you squeeze it in your eyes at night and in the AM depending on your symptoms. It reduces the amount of drops needed and helps a lot with wind conditions/fans. They are available in the drugstore in tiny tubes in the same aisle as the drops. My last batch of drops and gel/ointment I got through Swanson Health Products with my vitamins and they have worked well. All the ointment takes getting used, at least for me, as you can't see for 10 minutes or so as this vaseline type product is absorbed through the lower eyelid. ( I sort of freak out at not seeing) but then, blessed relief. My former opthalmologist had me using it in addition to the preservative free drops. It has been 2 years since he forwarded me to the neuro-opthalmologist but since the $120 drops weren't helping I went back to the ointment.

Take care,

Noreen

[Noreen]

FYI-

Something that has really helped me with the feeling of cotton mouth is Biotene toothpaste http://www.biotene.com/products/toothpaste...ent={placement}

[Sophia3]

No have not done the plugs...eyes fluctuate. Its the mouth that is maddening lately.

I never heard of OTC gel but have the goopy eye ointment and need to get another tube. My eye doc gives me that also. He's been a doll to me since the surgeons are so far away..and he's more understanding. This goop did not always seem to help but other times it did. It's like vasoline in texture.

I also need to invest in Biotene toothpaste. I found a sample of the Biotene oragel from my dentist but not sure it's better than the mouthwash.. THAT stuff is so expensive as well.

My optometrist gets only RARE samples and small amounts of the preservative free drops but they do help. I can get many drops out of one tube. I put the cap back on and use later. Eye can only hold one drop. So a $15 box can last me month...but yes, all this stuff all adds up.

I'm just irked at my blood test "never coming back". Sigh. I just re-read my autonomic docs email and it said this.

'some appear to still be missing. (the specific Sjogren's antibodies, and

Double stranded DNA))

perhaps they never will

but the SS-DNA (single stranded DNA is markedly abnormal: 212 units

with normal 0-19'

so the SS-DNA means Sjs but there are so many TESTS needed for all this stuff (Lupus dx) No wonder it can take 7-10 years to be dx. Sheesh. Thanks for the input on all this stuff. I have done MORE READING since the Wed AM email from my doc about the positive tests than I have in weeks or months.

So since the eye surgery "triggered the dry eye stuff" I must use my eyes less and rest them ..or it aggravates the eye discomfort for sure.

Off to drink coffee and get some drops.

[Sophia3]

*Duplicate post, sorry*

[tinkerbella]

Noreen,

Now you jogged my memory of the ointment...It used to remind me of my dogs eye medicine. lol. woof! Sometimes I was afraid I was going to scrape my eye out. I used that for years and forgot all about that. My eyes got put on the back burner due to distance getting to the right doctors for a while. I remember I felt so blurry vision with the ointment, but it was a life safer at night. $$$$$ pricey though! With the restasis I don't understand why they don't give you a bottle as you only use one drop per eye am and pm and throw the rest away. I think it is such a waste as it is as full all the other single use eye drops for dry eye that you use in one setting.

The first week I thought it was a mistake and put more in my eye and my eye got worse. I read on line that some people were told to put one vile in each eye when you only need one drop per eye. So, I stopped for a few days and started over the right way and I feel soooooooo much better already.

Thanks for being so helpful...

love,

Bellamia~

[tinkerbella]

Thanks for this link ; ) I'm going to have to try the toothpaste... this is sooo good to know. Us birds of the feather need to stick together!

I share every bit of info that helps me and that I find out.

Hang in there.

BellaMia~

[tinkerbella]

Sophia,

I hope you hear soon. I know how hard it is to sit and wait. I usually say no news is good news.... but here, we want answers to know why all this stuff is going on. Not that we want to have something else wrong with us. At least Sophia we all learned some new things here to relieve our symptoms. I just prayed that your answer will come soon.

It is a beautiful day here and hope you have a beautiful day where you are. We will be waiting with you to hear the answers you get.

Love,

bellamia~

[Noreen]

Bella,

I guess the plugs do come out. I went to the neuro-opthalmologist today and my right one had come out. she replaced it and said if it comes out again she'll cauterize it. she also wants me to give Restasis another shot.

So, of course, dear Bella you were right - thanks.

Noreen

[Noreen]

I ran across this NIH trial on dysautonomia and Sjogren's, It is currently recruiting,

http://www.clinicaltrials.gov/ct2/show/NCT...%22&rank=11

Evaluation of the Role of the Autonomic Nervous System in Sjogren's Syndrome

[Sophia3]

Reen

Interesting study! Wish I lived closer...can't travel really. But we always figured the dry mouth was due to ANS issues.....but then we get complacent if things worsen...and now the SUDDEN dry eye after the iridotomy issues....

Others

Apparently my endo & ANS doc of many years thought he ordered dsDNA test but did not...so since just my ssDNA was positive and other stuff were normal (like SED & ANA) I see a rheumatologist May 11th, I think. So will decide more tests then.

I've been enjoying the nicer weather for sure!