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Old 09-18-2012, 08:10 AM   #1
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Questions about Sjogrens diagnosis

Hello,
I hope you all can help with some questions I have.
I have a lot of autoimmune problems and have been in and out of the hospital for 30 years because of a rare autoimmune blood disorder. I am being considered for a bone marrow transplant because of damage done to my bone marrow from the cytoxan I took for my blood disorder.
I switched primary care doctors a few years ago and in my records it stated that I had tested positive for Sjogrens syndrome. He mentioned that to me and I said that I had never been told that before. He said that he would keep that in the back of his mind when treating me and we never really talked about it again.
After my last hospitalization in August I started having really bad dry eyes and dry mouth-it feels like I have sand in my eyes. I am not on any different medications. When I mentioned it to him he brought up the Sjogrens diagnosis and he sent me to my eye doctor. They had already dilated my eyes by the time I saw her so she couldn't do the schirmer's test but she said I did have signs of really dry eyes and started me on restasis.
After this I decided to try and find out where the positive test came from and found that it was back when I saw a doctor at Cleveland Clinic years ago and I had a positive SSBLa test.
The point of this LONG thread is that I have found out that since then I have also tested negative so some of my doctors don't feel that I have Sjogrens.

My question is, if you have a positive test and then you have a negative test what does that mean? Can you have false positives? I know you can have false negatives.

After reading some of the symptoms on this forum, for the 1st time I have thought "this is me"! I keep reading about people having a heaviness in their chest and the joint pain, changes in taste, the constant dry cough and gastroparesis-all symptoms that I have that don't really fit my blood disorder or any of my other autoimmune issues but that my doctors just assume I have because I have so many other problems, but now I am wondering if they are due to Sjogrens.
My primary care doctor believes that we should act as though I do, but my hematologist just kind of says "well even if you do there is not much we can do about it".
Sorry for the long post, but just kind of confused. How do you usually get diagnosed with Sjogrens and if you are diagnosed do you usually just treat the symptoms? And as I asked above, can you have a false positive?

Thanks so much for any help you can give me!!

~Coping

 
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Old 09-23-2012, 09:09 AM   #2
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Re: Questions about Sjogrens diagnosis

Quote:
Originally Posted by coping1 View Post
Hello,
I hope you all can help with some questions I have.
I have a lot of autoimmune problems and have been in and out of the hospital for 30 years because of a rare autoimmune blood disorder. I am being considered for a bone marrow transplant because of damage done to my bone marrow from the cytoxan I took for my blood disorder.
I switched primary care doctors a few years ago and in my records it stated that I had tested positive for Sjogrens syndrome. He mentioned that to me and I said that I had never been told that before. He said that he would keep that in the back of his mind when treating me and we never really talked about it again.
After my last hospitalization in August I started having really bad dry eyes and dry mouth-it feels like I have sand in my eyes. I am not on any different medications. When I mentioned it to him he brought up the Sjogrens diagnosis and he sent me to my eye doctor. They had already dilated my eyes by the time I saw her so she couldn't do the schirmer's test but she said I did have signs of really dry eyes and started me on restasis.
After this I decided to try and find out where the positive test came from and found that it was back when I saw a doctor at Cleveland Clinic years ago and I had a positive SSBLa test.
The point of this LONG thread is that I have found out that since then I have also tested negative so some of my doctors don't feel that I have Sjogrens.

My question is, if you have a positive test and then you have a negative test what does that mean? Can you have false positives? I know you can have false negatives.

After reading some of the symptoms on this forum, for the 1st time I have thought "this is me"! I keep reading about people having a heaviness in their chest and the joint pain, changes in taste, the constant dry cough and gastroparesis-all symptoms that I have that don't really fit my blood disorder or any of my other autoimmune issues but that my doctors just assume I have because I have so many other problems, but now I am wondering if they are due to Sjogrens.
My primary care doctor believes that we should act as though I do, but my hematologist just kind of says "well even if you do there is not much we can do about it".
Sorry for the long post, but just kind of confused. How do you usually get diagnosed with Sjogrens and if you are diagnosed do you usually just treat the symptoms? And as I asked above, can you have a false positive?

Thanks so much for any help you can give me!!

~Coping
hi coping1. i tested positive for sjogrens for 2 years, then negative on the 3rd, then positive on the 4th and negative on the fifth. there are lots of people that have sjogrens that never test positive and doctors say that the results are generally done by diagnosing all of the symptoms. the blood work doesn't always show up in all patients. i asked my internest if i had it or not and she said yes, along with fibromyalgia. i tested positive for sjogrens, although on the test results it lists other causes for the high antibodies such as scleroderma, connective tissue disorder, lupus, rheumatoid arthritis, etc., but i also tested positive for ssaRo which only shows up in sjogrens. my doc said there is no need to put me through the lip gland test as it is painful. i believe that when the body is suffering inflammation of some kind, that the test will be positive. reason being that i would be tested and feeling quite under the weather and it would be positive. i'm tested yearly and have noticed that if i'm feeling pretty good, i test negative again. it's funny too, because they test for inflammation and it's always negative at the time that i'm feeling unwell. you'll have okay times and times when you just feel like crap and want the world to go away, as i'm sure you're already familiar with this feeling. good thing is...it won't kill you. you will find new ways to cope with everything. i tend to be worse in the winter as i can't seem to get enough moisture and my muscles and bones ache so bad with the cold weather that the pain keeps me up some nights. my joints also tend to swell in the winter and i suffer more circulation or nerve problems, (still haven't determined which one it is yet). oh...and by the way....yes...they just treat the problems as they arise, if they become more serious, but to me it sounds like you may be in the earlier stages. it takes many years for sjogrens to develop. sorry for the long post, but i hope i've answered your questions. just take care of you and try to exercise...it does help, regardless of whether we feel like doing it or not. keep me posted okay.

 
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Old 09-26-2012, 10:35 AM   #3
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Re: Questions about Sjogrens diagnosis

Thanks for your reply boobootwo!
The weird thing about my situation is that when i wasn't having these symptoms I tested positive and now when I am, I've tested negative.
I have a lot of autoimmune issues and have had my blood disorder for so long that we tend to chalk all of my symptoms up to that, even when it doesn't fit. Now, when I read about Sjogrens, all these symptoms I have been having make sense. My internist is concerned because I get constant lung infections from just the simplest coughs-and every time I get an infection it triggers my blood disorder-it is just a vicious circle. He said he now believes that this is from the Sjogrens. Do you have any lung involvement?
I have started taking Restasis for my eyes-don't know if it is helping yet, but the drops burn. I've read that that is a common side effect.

Is there a particular reason that they test you yearly?

~Coping

 
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Old 09-27-2012, 06:46 PM   #4
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Re: Questions about Sjogrens diagnosis

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Originally Posted by coping1 View Post
Thanks for your reply boobootwo!
The weird thing about my situation is that when i wasn't having these symptoms I tested positive and now when I am, I've tested negative.
I have a lot of autoimmune issues and have had my blood disorder for so long that we tend to chalk all of my symptoms up to that, even when it doesn't fit. Now, when I read about Sjogrens, all these symptoms I have been having make sense. My internist is concerned because I get constant lung infections from just the simplest coughs-and every time I get an infection it triggers my blood disorder-it is just a vicious circle. He said he now believes that this is from the Sjogrens. Do you have any lung involvement?
I have started taking Restasis for my eyes-don't know if it is helping yet, but the drops burn. I've read that that is a common side effect.

Is there a particular reason that they test you yearly?

~Coping
i tested negative this year and have been noticing worsening symptoms. my gerd is acting up pretty bad and the aches and pains are keeping me awake at night...so yes...i agree with you about the testing as per symptoms. it's wierd. as for the lungs, i've learned to be extra cautious. i've had a weak lung all of my life. had pneumonia every year until i hit my 30's. i think i've now learned that i have to get my butt to my doc's within 2 days or i end up not being able to breath. last november i was on antibiotics for a month and actually took time off of work, which i've never done, ever. couldn't believe how sick i was. i worked as a cashier, so i disinfected everything, regularly, that people touched, including the phone i used, the keyboard, the interac and anything anyone leaned on or their kids slobbered on, plus using hand cleaner very often. it's sad that i have to be so cautious, but i don't want to get sick like that again. if i've had to visit the hospital, i always wear the masks that they have for sick people...even if i'm not sick...lol. just don't want to catch the drift of people sneezing.
as for restasis...it may take a month or two before the stinging stops. i found it helped somewhat and used it for over a year, but went back to using my own remedies.
i wanted the testing done yearly to see if this was all just a hormonal fluctuation and not sjogrens, since i have been in menopause for almost 3 years now, but...looks like i'm stuck with it since it keeps showing up in my testing. i also have them test for inflammation when i'm feeling particularly bad. i live in canada. not sure where you're from but we have coverage for all of this testing, although we do have to wait a fair amount of time to see someone.
just stay cautious in your surroundings, don't ever put your hands near your face in any way after you've gone out, until you wash them. if someone sneezes or coughs, cover your face with your jacket or kleenex if you have any, unless of course they sneezed on your jacket...lol. a few extra steps in your life will keep you healthier. better safe than sorry. hope this helps. if you need answers, please feel free to ask. hope you're feeling better for the most part....

 
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Old 09-27-2012, 07:14 PM   #5
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Re: Questions about Sjogrens diagnosis

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Originally Posted by boobootwo View Post
i tested negative this year and have been noticing worsening symptoms. my gerd is acting up pretty bad and the aches and pains are keeping me awake at night...so yes...i agree with you about the testing as per symptoms. it's wierd. as for the lungs, i've learned to be extra cautious. i've had a weak lung all of my life. had pneumonia every year until i hit my 30's. i think i've now learned that i have to get my butt to my doc's within 2 days or i end up not being able to breath. last november i was on antibiotics for a month and actually took time off of work, which i've never done, ever. couldn't believe how sick i was. i worked as a cashier, so i disinfected everything, regularly, that people touched, including the phone i used, the keyboard, the interac and anything anyone leaned on or their kids slobbered on, plus using hand cleaner very often. it's sad that i have to be so cautious, but i don't want to get sick like that again. if i've had to visit the hospital, i always wear the masks that they have for sick people...even if i'm not sick...lol. just don't want to catch the drift of people sneezing.
as for restasis...it may take a month or two before the stinging stops. i found it helped somewhat and used it for over a year, but went back to using my own remedies.
i wanted the testing done yearly to see if this was all just a hormonal fluctuation and not sjogrens, since i have been in menopause for almost 3 years now, but...looks like i'm stuck with it since it keeps showing up in my testing. i also have them test for inflammation when i'm feeling particularly bad. i live in canada. not sure where you're from but we have coverage for all of this testing, although we do have to wait a fair amount of time to see someone.
just stay cautious in your surroundings, don't ever put your hands near your face in any way after you've gone out, until you wash them. if someone sneezes or coughs, cover your face with your jacket or kleenex if you have any, unless of course they sneezed on your jacket...lol. a few extra steps in your life will keep you healthier. better safe than sorry. hope this helps. if you need answers, please feel free to ask. hope you're feeling better for the most part....
Boobootwo,
I'm used to being very careful about infections. I have an immune deficiency as well as a very low white count from bone marrow suppression-I'm being considered for a bone marrow transplant. The Sjogrens Syndrome is just another added attraction
My insurance will cover any test also, but I guess I just get frustrated when the results fluctuate so much- and my primary care Dr. doesn't feel it matters that much. He says once you've had a positive test you are considered positive. My hematologist, however, isn't as convinced. She feels like the positive test was a long time ago and the more recent test was negative....and there isn't a lot we can do about it anyway. She's more focused on my other issues which she feels are more urgent and they are, but these symptoms are very annoying!
I'm fortunate that I have my primary care doctor who looks at the whole picture-I see him every week & he oversees all my medical issues-kind of keeps things straight & keeps me from going crazy

How long have you been dealing with all of this?

 
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Old 09-27-2012, 07:44 PM   #6
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Re: Questions about Sjogrens diagnosis

Quote:
Originally Posted by coping1 View Post
Boobootwo,
I'm used to being very careful about infections. I have an immune deficiency as well as a very low white count from bone marrow suppression-I'm being considered for a bone marrow transplant. The Sjogrens Syndrome is just another added attraction
My insurance will cover any test also, but I guess I just get frustrated when the results fluctuate so much- and my primary care Dr. doesn't feel it matters that much. He says once you've had a positive test you are considered positive. My hematologist, however, isn't as convinced. She feels like the positive test was a long time ago and the more recent test was negative....and there isn't a lot we can do about it anyway. She's more focused on my other issues which she feels are more urgent and they are, but these symptoms are very annoying!
I'm fortunate that I have my primary care doctor who looks at the whole picture-I see him every week & he oversees all my medical issues-kind of keeps things straight & keeps me from going crazy

How long have you been dealing with all of this?
this all started when i became perimenopausal...about 42 years old. i started to have these freezing bouts, so bad that heating pads, blankets whatever couldn't warm me up. then once that subsided, i would start to suffer tachycardia, about 180 beats +. all kinds of weird things would happen to me...the feeling of being drunk and falling all over, tons of anxiety, which i've had since i was 27, after my fathers death. anywayyyy....turns out that i was estrogen dominant, so my doc put me on hormones, double progesterone and regular dose estrogen. seemed to bring me somewhat back to normal. i had taken the estrogen/progesterone for about 10 years and decided that was long enough, since doc's recommend you take them no longer than 5 years. then i started getting all kinds of other symptoms and of course, everyone just thinks you're a hypochondriac. after years of complaining and everyone just telling me that it was menopause, i started to do my own research and read about the a.n.a. test. i asked my doc to humour me and send me for the test. sure enough....sjogrens...then a year or so later, fibromyalgia, which tends to go hand in hand with most autoimmune disorders. can't believe that i went from a pretty muscular woman, since i was weight training for years, down to an achy old lady...lol. i'm sick of being sick. i'm now 56 and life isn't getting any easier, but....i suppose it's acceptance. one of the many lessons in life....oh right...tolerance has to be a big one in there too...lol.
if it's not too personal, can i ask what type of blood disorder you have?

 
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Old 09-27-2012, 08:45 PM   #7
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Re: Questions about Sjogrens diagnosis

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Originally Posted by boobootwo View Post
this all started when i became perimenopausal...about 42 years old. i started to have these freezing bouts, so bad that heating pads, blankets whatever couldn't warm me up. then once that subsided, i would start to suffer tachycardia, about 180 beats +. all kinds of weird things would happen to me...the feeling of being drunk and falling all over, tons of anxiety, which i've had since i was 27, after my fathers death. anywayyyy....turns out that i was estrogen dominant, so my doc put me on hormones, double progesterone and regular dose estrogen. seemed to bring me somewhat back to normal. i had taken the estrogen/progesterone for about 10 years and decided that was long enough, since doc's recommend you take them no longer than 5 years. then i started getting all kinds of other symptoms and of course, everyone just thinks you're a hypochondriac. after years of complaining and everyone just telling me that it was menopause, i started to do my own research and read about the a.n.a. test. i asked my doc to humour me and send me for the test. sure enough....sjogrens...then a year or so later, fibromyalgia, which tends to go hand in hand with most autoimmune disorders. can't believe that i went from a pretty muscular woman, since i was weight training for years, down to an achy old lady...lol. i'm sick of being sick. i'm now 56 and life isn't getting any easier, but....i suppose it's acceptance. one of the many lessons in life....oh right...tolerance has to be a big one in there too...lol.
if it's not too personal, can i ask what type of blood disorder you have?
Not too personal....I have an autoimmune blood disorder called Henoch Schonlein Purpura. It is something that occurs more often in children and is usually less severe and more limited-many times children have it once and get over it with no problem. When adults get it, they usually have more complications and it is often reoccurring. My symptoms are severe abdominal pain and bleeding, petechia (bleeding under the skin) and bleeding from the kidneys. They do plasmapheresis as a treatment to wash certain antibodies out of my system. I also have hypogammaglobulinemia which is treated with high dose IVIG.
I was 1st diagnosed in the early 80's and have been hospitalized many times-sometimes for 4-5 weeks at a time. I went into remission from from 2000-2008, but relapsed and now any type of infection triggers it. I was treated with cytoxan in the early 90's which put me into premature ovarian failure (at the age of 33-so glad I didn't listen to the doctors about waiting to have children!) and again in 2008 and the cytoxan caused bone marrow damage-hence the possible bone marrow transplant.
I was hospitalized 5 times in 2010, 5 times in 2011-but now they have created a fistula in my arm so that I can get the plasmapheresis once a month outpatient which has really cut back on my infections and therefore my purpura. I have only been hospitalized inpatient twice this year. I also have a mediport which makes all the infusions much easier.
So, as I said before, I have been having a lot of symptoms that didn't really fit my other diagnosis's but that my doctors just attributed to all of my previous medical problems. When I started reading about Sjogrens, it all just kind of clicked.
It's amazing how you can just kind of get comfortable with what you know even when it doesn't make sense-and the doctors do too. It's kind of a relief to know what is causing all of these other symptoms!!

What kind of doctors do you see?

 
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