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Old 03-28-2014, 07:54 AM
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
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en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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If you have positive SSB makers, positive ANA & RNP...and symptoms, I don't see the need for a lip biopsy. Your diagnosis should be made on the factors/labs above. Sure, the lip biopsy is the gold standard, but I'd consider it overkill at this point and an unnecessary procedure.

Sure, there may be some with the SSB marker without current/active Sjogren's, but they have a good chance of developing symptoms later on. But since you have symptoms NOW, you should be given the proper diagnosis of Sjogren's without the biopsy.

I have always had negative markers (for everything), but my lip biopsy was very positive and I had all the symptoms. I also have SFN and confirmed damage to the dorsal root ganglia via a new MRI at Johns Hopkins (and suspected autonomic ganglia based upon other findings/diagnosis).

The reason they believe my labs are negative is due to the fact that my immune system (in general) is also deficient. I receive IVIG now, but at a dose for immune deficiency,not SFN. I also got IVIG for 9 years starting back in '97, but it didn't help the neuropathy. It was just as expensive then, as it is now. My infusions run about $10,000 a month. Back in the 90's, it was about $8000 (because it did it at home and it is always less with just a home nurse vs infusion center with doctor and others on staff).

Your infusions will be more expensive because your dose (for SFN ) is higher.
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