It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sjögren's Syndrome Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 07-30-2012, 05:50 PM   #1
Senior Member
(female)
 
Join Date: Jun 2011
Location: US
Posts: 173
maiyen HB Usermaiyen HB User
Question 'Early' Sjogren's?

Hi all,

I just had a follow-up with a rheumy who ordered a complete set of tests and everything came back negative except she told me to keep an eye on my blood count and my ANA was positive for the third time (this time it was 1:2560; homogenous). She believes that it could be what she called early Sjogren's due to the dryness in several areas and a few other symptoms. However she said that the labs aren't supporting it yet so there is no diagnosis.

For now we're just treating the most problematic symptoms which is ongoing aches and pains. She told me to get some dry eye tests done and if I really wanted to, a lip biopsy, although I don't really feel as if my mouth is dry...I just feel as if food gets stuck in my throat sometimes. Anyway, I just got back from my eye appt and I had the phenol red thread test done (results were 14mm and 11mm) and the fluorescein breakup time test (results were 5 seconds and 3 seconds). The doctor said that anything below 10mm was considered deficient for the thread test, but the amount of tears that I produced would not be considered normal. And he said that I was far below the 10 second normal time for the fluorescein time test. He recommended a prescription for Restatis.

This rheumy does not agree with any of my former diagnosis from other rheumatologists (UCTD and fibro) and I trust her very much as she is at a teaching hospital and extremely thorough and informative. But if there is nothing definitive showing up (no positive SS-A or SS-B), is there something in particular that I can watch for? Can you have an abnormal result with one dry eye test and not a completely deficient result with the other? Thanks for your advice and help!

 
Reply With Quote
Sponsors Lightbulb
   
Old 07-31-2012, 04:21 PM   #2
Junior Member
(female)
 
Join Date: Feb 2012
Location: Cold Lake
Posts: 41
Knot HB User
Re: 'Early' Sjogren's?

Hi maiyen,

I was diagnosed in Nov of 2011 and my blood work was all negative. All of the tests my Optometrist did showed below the norm. My eyes are so dry that my eyelids are stuck to my eyeballs every morning. My mouth is very dry and I have trouble swallowing as well. I have a large number of other symptoms as well (hair loss, weight loss, rashes, Raynauds, sore joints, muscles, extreme fatigue and the list goes on.) My Rheumy says that a large percentage of people who have Sjogren's actually test negative. That is part of the reason that it is so hard to diagnose. I think anything I have read says that about 30% test negative but he says that it is more like about 50%. He said we could do a lip biopsy but that he was certain enough of his diagnosis that he really didn't want to put me through that unless we had to fight with an insurance company. He also told me that Sjogren's symptoms can often mimic the symptoms of other diseases like fibro,RA, lupus and MS.

Someone on this site recommended a book to me called "The Sjogren's Book Fourth Edition" it has been a great help to me in understanding this illness. My advice is to pick up a copy . And don't be afraid to disagree with a Dr. I've learned that you really need to be your own advocate in this. If I hadn't pushed I would not have gotten a diagnosis. Prior to my "pushing", every Dr I saw wanted to blame it all on menopause. Hopefully I don't seem too "pushy" here, I just feel strongly that we must listen to our body and listen to that inner voice and I sense that you have some doubt about your diagnosis. I really like my MD, but I had to disagree with him and argue with him, but eventually he listened (or maybe I wore him down. ha ha) and he sent me to A Rheumy that is wonderful. He really listens, explains things until I understand, and is very compassionate and knowledgeable. And my MD still likes me! Hugs to you, and take care! Knot

 
Reply With Quote
Old 07-31-2012, 04:25 PM   #3
Junior Member
(female)
 
Join Date: Feb 2012
Location: Cold Lake
Posts: 41
Knot HB User
Re: 'Early' Sjogren's?

Hi maiyen,

I was diagnosed in Nov of 2011 and my blood work was all negative. All of the tests my Optometrist did showed below the norm. My eyes are so dry that my eyelids are stuck to my eyeballs every morning. My mouth is very dry and I have trouble swallowing as well. I have a large number of other symptoms as well (hair loss, weight loss, rashes, Raynauds, sore joints, muscles, extreme fatigue and the list goes on.) My Rheumy says that a large percentage of people who have Sjogren's actually test negative. That is part of the reason that it is so hard to diagnose. I think anything I have read says that about 30% test negative but he says that it is more like about 50%. He said we could do a lip biopsy but that he was certain enough of his diagnosis that he really didn't want to put me through that unless we had to fight with an insurance company. He also told me that Sjogren's symptoms can often mimic the symptoms of other diseases like fibro,RA, lupus and MS.

Someone on this site recommended a book to me called "The Sjogren's Book Fourth Edition" it has been a great help to me in understanding this illness. My advice is to pick up a copy . And don't be afraid to disagree with a Dr. I've learned that you really need to be your own advocate in this. If I hadn't pushed I would not have gotten a diagnosis. Prior to my "pushing", every Dr I saw wanted to blame it all on menopause. Hopefully I don't seem too "pushy" here, I just feel strongly that we must listen to our body and listen to that inner voice and I sense that you have some doubt about your diagnosis. I really like my MD, but I had to disagree with him and argue with him, but eventually he listened (or maybe I wore him down. ha ha) and he sent me to A Rheumy that is wonderful. He really listens, explains things until I understand, and is very compassionate and knowledgeable. And my MD still likes me! Hugs to you, and take care! Knot

 
Reply With Quote
Old 07-31-2012, 04:28 PM   #4
Junior Member
(female)
 
Join Date: Feb 2012
Location: Cold Lake
Posts: 41
Knot HB User
Re: 'Early' Sjogren's?

Ok. No idea how I posted that twice...

 
Reply With Quote
Old 08-03-2012, 07:52 PM   #5
Senior Member
(female)
 
Join Date: Jun 2011
Location: US
Posts: 173
maiyen HB Usermaiyen HB User
Re: 'Early' Sjogren's?

Hi Knot,

Thanks so much for the info! An optometrist made a comment at my eye appointment 2 years ago about how my eyes were dry and I didn't think anything about it then. But now that it's pretty much impossible for me to wear my contacts any longer than a couple of hours it just made me start thinking about it more. I used to be able to wear contacts for days at a time and they never bothered me. I also have hair loss (and dry hair), rashes, sore joints and muscles, fatigue, etc.

May I ask if your tests were negative, did you bring up the idea of Sjogren's or did your rheumy based on all of your symptoms? I have heard that you can be diagnosed with Sjogren's without having a positive SSA/SSB, but I don't know the details of that. To be honest, I'm not sure what my inner voice thinks anymore because first I was told I had fibro, then it was undifferentiated connective tissue disease and now Sjogren's is being mentioned? I don't know what to think about 3 different beliefs from 3 different rheumatologists. The only thing I felt pretty strongly about was that I didn't think that it was fibro. I have heard from multiple sources that a positive ANA and presence of inflammation (I've had elevated sed rates) is not indicative of fibro so it made me feel as if it was something else...although maybe it could be fibro and something additional.

And no, I don't feel as if you're being pushy at all. I appreciate that you responded and let me know what your personal experience was. So thank you! I hope that you are feeling better now that you can get some proper treatment.

 
Reply With Quote
Old 08-05-2012, 03:26 PM   #6
Junior Member
(female)
 
Join Date: Dec 2011
Location: U.S.
Posts: 29
sjogrens HB User
Re: 'Early' Sjogren's?

SS-A is also positive in other disease processes (e.g., SLE) so even having a positive SS-A and ANA wouldn't definitively mean you have Sjogren's. This is why rheumatologists have to rely on SYMPTOMS as well as blood work to work toward a diagnosis. Rheumatoid factor is closely associated with rheumatoid arthritis, but it's actually present more often in people with primary Sjogren's disease!

Is your rheumy treating your symptoms? Have you been prescribed Plaquenil or something to help with the joint pain/muscle pain? As long as your symptoms are being treated properly, the name of the diagnosis can wait until a clearer picture of what you're dealing with becomes apparent :-)

 
Reply With Quote
Old 08-05-2012, 08:49 PM   #7
Junior Member
(female)
 
Join Date: Feb 2012
Location: Cold Lake
Posts: 41
Knot HB User
Re: 'Early' Sjogren's?

Hi maiyen,

Of course you can ask! My tests were all negative. When I went to see my Rheumy for my initial consult I didn't mention anything about what I thought it could be(I was actually feeling very confused and frustrated by everything that had been happening)I really had no idea what to think it was by then. He spent about 45 minutes listening, asking questions and taking notes, doing a physical exam and then left while I got dressed and came back in the room and told me "you have Sogren's Disease." I said but my family Dr ran tests to rule out connective tissue disease and all the test results were negative. That's when he explained the percentages to me and told me he wanted to run his own panel of tests. I said what if they're negative? He told me he didn't care what the tests said. He was certain of his diagnosis. He ran so much blood work...12 tubes of blood! I thought I should get a cookie and some juice after that! lol (it was all neg) He didn't recommend drugs at that point (I was against it) But two months later when I started to lose hair and more weight he advised me to take plaquenil. He has been a really good listener and because I live a distance from the city where he practices (I live in a smaller community about 3 & a half hours away) he has been wonderful about returning my phone calls whenever I have a question. I really hope you can find a Rheumy like him. He's even open to alternative medicine and has been supportive about my trying acupuncture. He says he knows of some people trying it and feeling better. So I have also found a very reputable Acupuncturist who I started seeing last week. He says I will feel better in 3 months. I say "I can't wait"! Lucky for me the acupuncturist has a student(he teaches all over the world) in the town where I live so I don't have to go to the city for every treatment. He's is just giving his student the acupuncture points and I will see him again in 3 months. I'm crossing my fingers...

All in all I feel better in some respects. I have fewer rashes, less joint and muscle pain. I'm having more fatigue again lately, my hair loss has slowed down some (not stopped though),and I'm sleeping better. My eyes and mouth are still horrible. But if I drink tons of water and really watch my diet I can cope. I think that just knowing whats wrong makes a lot of difference. I see my Rheumy again on the 20th so...I'll see what he says.

Whew. I am long winded. Hope something in here will help. Keep us posted and take care of yourself!

 
Reply With Quote
Old 08-05-2012, 08:57 PM   #8
Junior Member
(female)
 
Join Date: Feb 2012
Location: Cold Lake
Posts: 41
Knot HB User
Re: 'Early' Sjogren's?

Hi maiyen,

Of course you can ask! My tests were all negative. When I went to see my Rheumy for my initial consult I didn't mention anything about what I thought it could be(I was actually feeling very confused and frustrated by everything that had been happening)I really had no idea what to think it was by then. He spent about 45 minutes listening, asking questions and taking notes, doing a physical exam and then left while I got dressed and came back in the room and told me "you have Sogren's Disease." I said but my family Dr ran tests to rule out connective tissue disease and all the test results were negative. That's when he explained the percentages to me and told me he wanted to run his own panel of tests. I said what if they're negative? He told me he didn't care what the tests said. He was certain of his diagnosis. He ran so much blood work...12 tubes of blood! I thought I should get a cookie and some juice after that! lol (it was all neg) He didn't recommend drugs at that point (I was against it) But two months later when I started to lose hair and more weight he advised me to take plaquenil. He has been a really good listener and because I live a distance from the city where he practices (I live in a smaller community about 3 & a half hours away) he has been wonderful about returning my phone calls whenever I have a question. I really hope you can find a Rheumy like him. He's even open to alternative medicine and has been supportive about my trying acupuncture. He says he knows of some people trying it and feeling better. So I have also found a very reputable Acupuncturist who I started seeing last week. He says I will feel better in 3 months. I say "I can't wait"! Lucky for me the acupuncturist has a student(he teaches all over the world) in the town where I live so I don't have to go to the city for every treatment. He's is just giving his student the acupuncture points and I will see him again in 3 months. I'm crossing my fingers...

All in all I feel better in some respects. I have fewer rashes, less joint and muscle pain. I'm having more fatigue again lately, my hair loss has slowed down some (not stopped though),and I'm sleeping better. My eyes and mouth are still horrible. But if I drink tons of water and really watch my diet I can cope. I think that just knowing whats wrong makes a lot of difference. I see my Rheumy again on the 20th so...I'll see what he says.

Whew. I am long winded. Hope something in here will help. Keep us posted and take care of yourself!

 
Reply With Quote
Old 08-07-2012, 10:59 AM   #9
Senior Member
(female)
 
Join Date: Jun 2011
Location: US
Posts: 173
maiyen HB Usermaiyen HB User
Re: 'Early' Sjogren's?

Well the symptoms that we are trying to treat at the moment are mainly the aches and pains. I am not taking plaquenil, only an anti-inflammatory and a muscle relaxer which I take daily. I'm on my second anti-inflammatory and my fourth muscle relaxer, the doctors keep switching the types around but I don't feel much of a difference when I take them or don't. I did try cymbalta before (for the rheumy who thought it was fibro) and it made me unbelievably nauseous and anxious, so I had to stop after a week or two.

Interesting info you all...many thanks!

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



boobootwo (8), luca689 (7), quincy (4), ladybud (4), Knot (3), dltt48 (3), owllover99 (3), surreygal (2), Elbie (2), ablondegypsy (2)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 09:38 PM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!