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Sjögren's Syndrome Message Board
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Old 04-29-2013, 01:57 PM   #1
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North Elf HB User
Trying to Figure this all out !!!

I have been at this for over 2 years. My bloodwork is clear, except for a low IgG level.

Sjorgen's symptoms I have...
lots of fatigue
joint/muscle pain - started it all
dry eyes (unable to wear contacts for years)
have had nose sores (dry)
blood blisters in mouth
very cold hands/feet but not white
recurrent chest infection/chest issues (lung)
blurry vision when tired (dry?)
gland pain behind chin regularly
sun sensitivity for my eyes
dry skin....though it has been winter

I have been tested for anti CPP (ccp?), rheumatiod factor, esr (?) - dismissed by two rheumatologists. My doc is hinging it all on a low IgG but I have been reading a lot and Sjorgen's seems to fit.

I am at my breaking point. I am starting to consider quitting my job or changing it radically...I am tired of being tired. What should I ask him for ? Lip biopsy ? Anti-Ro and anti-La tests (pretty sure I haven't had these) ?

Any info/ help would be awesome...thanks in advance.

 
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Old 04-30-2013, 05:44 AM   #2
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Catalina1 HB User
Re: Trying to Figure this all out !!!

My diagnosis came from twice having a positive ana, ssa & ssb test. ssa and ssb are anti ro and lo

I know it's hard not to have a positive diagnosis, however, with or without, all they can do is treat the symptoms.

You end up seeing a specialist for each symptom. There are so many, and they come and go.

My biggest symptom is that I think SS is a pain in the ___ well you get the picture.

Please forgive my humor. I know it is very serious issue.

Last edited by Catalina1; 04-30-2013 at 05:48 AM. Reason: errors

 
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Old 05-02-2013, 07:15 AM   #3
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Re: Trying to Figure this all out !!!

My doc put me on plaquenil...hopefully this helps...........lots of pain this morning. Man this sucks. I guess it'll take awhile to see if it works.

 
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Old 05-02-2013, 12:27 PM   #4
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tb5663 HB User
Re: Trying to Figure this all out !!!

Plaquinil is the med for sjogren's. I tested positive for ANA and 3.4 for ssb almost 4 yrs ago, but was just started on this med this week. so far it's killing my stomach, but for me the sjogrens is so systemic that I'm going to stick with it and hope I can adjust to it eventually. my doc did mention that it could take as much as 3 months of this med before it starts working. You know they use this med to treat malaria. I read Plaquinil is also used for lupus and rheumatoid arthritis.
hope it works out for you....

 
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Old 07-22-2013, 04:48 PM   #5
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surreygal HB User
Re: Trying to Figure this all out !!!

Hi there:
Unfortunately it does sound suspiciously as though you have SS. There is no definitive test for it, but there are some good markers. I have never tested positive for any of the "gold standard" blood tests, such as ENA, ANA, Sed Rate, Rh Factor or the SS specific RO antibodies. However, I had a profoundly positive (meaning, it showed really old pathologically infiltrated cells, a few decades from the looks of some of them) lip biopsy and later had other types of atypical blood tests. Often doctors tell patients that nothing has shown up in their blood tests, but that is because the doctors aren't running the correct tests. For instance, if no serum protein electrophoresis had been finally done on me, I doubt to this day even with my lip biopsy results that I would be being treated for SS. Doctors have a nasty habit of repeating the same common blood tests (these are fairly cheap comparatively) and then using this argument to tell their patients that there is either nothing wrong, or it must be benign and self limiting. There are literally hundreds of different types of blood tests alone, so how can a doctor make a claim such as "having run every type of test..."? This type of answer is designed to shut up a patient. It's really annoying, not to mention demoralizing to the patient. Don't let this happen to you, if you are feeling that way. Listen to your body--you know it's telling you something is wrong and it needs to be heard.
My blood work reveals a chronically low CD 3 and CD 4 count. (Has anyone ever run these complement tests on you? If not, then request them.) CRP is C-reactive protein, which is used as an inflammatory marker. I have never tested positive for this test, either. According to my blood test results, I also suffer some liver dysfunction and I also frequently have low neutrophils (white blood cells). I get regular serum protein electrophoresis testing done which can be quite revealing. You might want a lip biopsy. This was my "clinching factor" for my disease, but this is not the case for everyone. I had such profoundly established and extensive ss white cell infiltration that there was no denying from whence it came. However, since only very tiny specimens are taken from just a few oral sources, finding infiltration of these rogue SS cells can be like trying to find a needle in a haystack, which can and frequently does offer false negative results. Still, I think I personally would go for it because if the biopsy results are positive, then you may feel like you are moving in the right direction in obtaining a diagnosis. If the results are negative, it may be worth another try at a biopsy with specimens this time being taken from different sites.
SS can cause all the symptoms you are experiencing, plus many more. May you find the answers you deserve, and soon. Very best wishes to you.

Last edited by Administrator; 07-25-2013 at 12:10 PM.

 
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Old 09-22-2013, 11:03 PM   #6
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cmbrumme HB User
Re: Trying to Figure this all out !!!

My test came back positive and the next time negative. My mom has two autoimmune disorders and they showed negative until 55 years of age. She suffered for years without treatment. I am getting treatment now and I have been told I will need to go to an eye doctor, stomach doctor, rhem doctor, etc.. to treat the symptoms. I get so depressed and tired that some days it is difficulty to work. I keep feeling like I am a medical burden on my family because the copays are 40.00 dollars plus each time I go. I am trying to stay positive but some days I get really depressed because I was normal several months ago. I had some signs but I think it was nothing.

 
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Old 10-07-2013, 05:47 PM   #7
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nannysbaby HB User
Re: Trying to Figure this all out !!!

tb5663, I know your stomach pain with regard to the Plaquenil, but it is worth it even though it takes a few months to really appreciate it is working. My suggestion is that you take your Plaquenil with your food at mealtime(s). I mean literally with the food. When you are about to swallow the food, pop one through your lips and swallow the pill with the food. I cannot tell you what a difference it made to my stomach! The weird thing was I would have the most pain in my stomach during the night when my stomach was empty and had no medicine in it. I can't figure that one out. Also I would eat enough food. Not dry popcorn or a couple of soda crackers, but something more that would last in my stomach for a little while.

This medicine really helped me for 5 years and I pretty much lived my normal-type life. Then I took a turn for the worse and have been struggline for 2 more years. But I am not incapacitated to where I can't do anything at all and I keep hoping the flares will phase out for a while.

Hope you are having an 'improved' and pleasant day.

 
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