Author Topic: Early Sjogrens Diagnosis Information  (Read 4715 times)

BrendaS

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Early Sjogrens Diagnosis Information
« on: April 22, 2014, 07:20:29 PM »
This is not a research project I have any involvement with but I saw the article for my University and thought is may be of interest to some of you. It looks like this should already be available I'm wondering if anyone has seen this yet. It's a new early detection test for Sjogrens that was released this past fall.

http://www.buffalo.edu/news/releases/2012/12/13854.html

http://optometrytimes.modernmedicine.com/optometrytimes/news/nicox-partners-immco-diagnostics-market-sj-gren-s-syndrome-test
« Last Edit: April 22, 2014, 07:24:15 PM by BrendaS »

litliwlowa

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Re: Early Sjogrens Diagnosis Information
« Reply #1 on: April 22, 2014, 07:37:24 PM »
Thank you, Brenda. Actually I recently had the early detection test, the IMMCO one via lab draw (not pin prick) and had my positive for Sjogrens that way.
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BrendaS

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Re: Early Sjogrens Diagnosis Information
« Reply #2 on: April 22, 2014, 07:49:11 PM »
thanks I was hoping to hear some actual report on if it is in main stream use today. You know how there are tests for many things but often they are not used, insurance not covered etc.

I was reading this one about how misdiagnosed Sjogrens is. http://buffalo.twcnews.com/content/lifestyles/healthy_living/704021/sjogrens-can-be-tricky-to-diagnose/

Very unfortunate when there are diseases out there that cause people distress and commonly they are ignored or misdiagnosed.

Joe S.

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Re: Early Sjogrens Diagnosis Information
« Reply #3 on: April 23, 2014, 04:24:46 AM »
Most of us do not have the funds for tests that are not covered by insurance. Personally I have had so many negative tests that I do not see the point of them. It appears to me that most are just another medical fund raiser. I believe that the best Dx for sjogren's is on symptoms. The doctors do 7 years of test before making a Dx on symptoms. Yes, mostwill start treatment with medication before a Dx. Some like me have bad reactions to these drugs and end up using alternative therapies.
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litliwlowa

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Re: Early Sjogrens Diagnosis Information
« Reply #4 on: April 23, 2014, 04:30:47 AM »
Quote
You know how there are tests for many things but often they are not used, insurance not covered etc.

I had to sign something regarding the possibility that the test might not be covered by insurance. In my situation, my rheumy has been treating me for Sjogrens even tho initially seronegative and negative lip biopsy. My dilemma was more with other specialists (such as neurologist and vascular docs) who can't seem to grasp that Sjogrens is a lot more than just dry eyes and dry mouth.

That's why, when Rheumy offered that test, I jumped on board with it.
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soycoffee

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Re: Early Sjogrens Diagnosis Information
« Reply #5 on: May 30, 2014, 04:34:50 AM »
The problem is, though, that for some years before now, international research has established the criteria for a Dx of Sjogrens. There would now have to be studies of this test compared on people already diagnosed, with a very high correlation between the "early test" and the standard research criteria for Sjogren's, before the new test would be very useful in many contexts.

Put another way, the new test would enable one to say -- what, "I have presumptive Sjogren's and I'm waiting until the other shoe drops? Until the research criteria are met?"

Once there's a very large body of evidence supporting the new test, and that it helps to establish the disabling impact of Sjogren's, it will be useful. If you need your local rheumy to believe that what you have is Sjogren's, it might help, and move you on to the International research criteria standard,

What is really needed is a fairly large study that adds this new test to a body of people who concurrently are going through all the steps of the International Research Criteria for a diagnosis of Sjogren's. It doesn't have to be another international study, but the number of participants should be sizable.
« Last Edit: June 06, 2014, 09:56:51 PM by soycoffee »

DryGuy

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Re: Early Sjogrens Diagnosis Information
« Reply #6 on: June 04, 2014, 10:56:23 AM »
I had spoken to my rheumatologist who is on the SSF medical advisory board about these tests.  He told me that they were having a meeting about this test this past May and were wanting to study it wit their patients to eventually have it become a part of the diagnostic criteria.  It's a step in the right direction.  Unfortunately all of these things take a lot of time.

soycoffee

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Re: Early Sjogrens Diagnosis Information
« Reply #7 on: June 06, 2014, 09:41:52 PM »
Reminder: Some of us started the path by losing teeth suddenly, then five years later,  developing peripheral neuropathy. The diagnostic criteria for Sjogren's do not reflect that kind of pathway. I got treated for a lot of other things before I ever found my way to Sjogren's. I will see my rheumy this week and remind him. Others on this forum have also mentioned starting with neuropathy.

Actually, looking back, the first clue was that my feet did not sweat (ten years before I lost teeth). Since I had ichthyosis (dry skin) from birth, I would not have asked a doctor about that or been really concerned. Others might be more alarmed and mention it to family and friends.

Best,
Soycoffee