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08/19/2011 08:30 PM

confused to say the least!

kellylynn
kellylynn  
Posts: 239
Member

Hello to everyone, i have not written for awhile because i am going through a difficult time i will explain.... It started with my trip to see a different rheumy he did the usual blood work that comes along with testing for sjogrens, but he told me that i did NOT have the syndrome. Which has through me totally off guard since i have been treated for it for 5 yrs almost. So i was left feeling angry mad confused all sorts of different emotions. After taking sometime and thinking about this i have decided to get a 3rd opinion. I am trying to get into the mayo clinic in Minnesota. They are going to call me on monday to tell me what they can do. I don't understand how one rehumy can be so sure while the other is saying definitely no. Has this happened to anyone else? Well thats why i have not been on for awhile but i will let you all know what happens. And thank you for the hugs i have been getting.

kellylynn

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08/19/2011 10:29 PM
twistedDNA
twistedDNA  
Posts: 1162
VIP Member

Hiya Smile

Although this doesn't happen to everyone it is quite common Sad I have had similar experiences Pinch I have been to 3 rheumy's and given 3 diagnosis. Doctors attend medical school but apparently are not educated enough about autoimmune issues especially the rare ones we suffer from.

You might get another diagnoses from the 3rd rheumy Dizzy or you might get the sjogren's confirmed. What tests did they use to diagnose you with?

I have been through it all, not believed or taken seriously, high ANA titer with one rheumy, the next a low titer. Confirmed diagnoses from my ophthalmologist, to only have the 2nd rheumy dismiss it without any testing other then an ANA which was positive but not high enough in his mind. He does not realize our ANA levels can differ from one test to another. Not all of us have the SSA and/or SSB antibodies. There is not ONE clear test that can confirm nor eliminate it. I've read in a 'few' articles that they assumed the lip biopsy was the 'gold' standard in diagnoses when in fact it is not Sad

I found a research study and asked them about the testing and they told me there are six ways to test you. I posted it in the forums a few months ago. If you can get to Baltimore or San Francisco and I believe LA? They will test you for free and I think the study is open until Fall of 2012.

I was frustrated angry and depressed when I had no diagnoses and now feel it doesn't matter all that much as long as I am treating my symptoms in a responsible way. I found a great MD that will have no problems ordering periodic labs to see how things are going. And my last rheumy stripped away the Sjogren's diagnoses I was given a year and a half before Ermm Since then I have done more of my own research and that's how I found out how different MDs and rheumys are and very few of them go through the six criteria to see how many you test positive for. And on top of that like I mentioned earlier you could be positive on one test then a month, year or whatever later be negative for the very same test. Diagnoses for an autoimmune problem is not an exact science Sad Angry Ermm

Post edited by: twistedDNA, at: 08/19/2011 10:30 PM


08/19/2011 10:44 PM
twistedDNA
twistedDNA  
Posts: 1162
VIP Member

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