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Old 07-31-2010, 07:44 PM #11
dahlek dahlek is offline
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Default Lesley- Good thing you didn't just give up!

Now go do a search here first using the 'search feature' in the top blue bar and then go from there and search the dickens outta Sjorgens'!
You've asked just the key ONE more question that got that neuro into GEAR!
Learn more? Ask HARDER [more complicated] questions! Let the doc know you aren't stupid or a chump! [http://dictionary.reference.com/browse/chump ] Docs often take us for this? Sad but true. Let the docs know you are smart, self-interested, curious, and want to get to the ROOT of this all! Once a doc knows you aren't a doormat or stupid? They'll respect you for your questions...only don't ask too many at once? Just 1-3 biggies, and work your way down the list/lists as visits go on. Don't forget? Docs have MANY patients and short attention spans. Sigh.
IF IVIG should come up as a possible treatment? Do know that it 'works' for from 40-60% of those who try it. So it's a flip-a-coin as to yes or no if it works. But? When it works? IT WORKS! Keep at it and keep faith in yourself that something's NOT right and that maybe it CAN be helped! 's a'plenty! - j
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Old 08-01-2010, 10:03 PM #12
dany dany is offline
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Default Negatives are a good thing

And my physical therapist told me to just think about the negative results as good things! At least I didn't have that thing wrong....but I was so wanting to find something wrong!!! I had not found anything out yet, like you.....but eventually I did....
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dahlek (08-02-2010)
Old 08-02-2010, 09:41 AM #13
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Default

Even Sjogren's is a mess for diagnosis....it can be anything from seroneg. sicca to full blown one tick short of scleroderma. Rheumatology needs to fix this mess. They likely go with Sjogren's whenever there is PN, but PN can occur in ALL immune diseases.....There is also UCTD, and if the ENA is negative, UCTD is a possibility, and UCTD will likely be diagnosed even more in the future.

For some reason when there is PN, they jump to Sjogren's, even if it is seroneg.

I dunno....well, at least you know something autoimmune is going on....same for me.
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Old 08-02-2010, 05:48 PM #14
dahlek dahlek is offline
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Default Cy? Well, wouldn't up-to-date training of these trodolytes help?

http://www.urbandictionary.com/defin...erm=Trogdolyte
Pick your definition?
This is what second and third opinions are for..... The one that gets you where you THINK you need to go? Is the one to go with.
I've been there? I do appreciate all that you are going thru! Sometimes It can be a road where you end up far from where you expected tho...so go with all the flow of the diagnostics and tests? But don't give up! 's - j
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Old 08-06-2010, 03:18 AM #15
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Post Idiopathic

Back from my doctor and my blood test results and he said my tests for Sjogren's are negative. I guess I now have to accept Idiopathic as my diagnosis. I don't know what else to do we don't have the Medical Centre's like you do in the States so I am at a lose at what to do now.
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