Thread: IVIG treatment
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Old 12-15-2015, 11:01 PM
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en bloc en bloc is offline
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en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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David,

The MRI I had is probably best called an MRN. It was (and may still be) experimental at the time done (a good 5 years ago) as an MRI with a special DRG (dorsal root ganglia) Protocol...to look directly at the DRG. This was at Hopkins, through their neuro dept. I don't know if anyone else offers this special DRG protocol now (it was not offered anywhere else at the time mine was done). The enlargement also generate increase signal, so they concluded it was a sign of inflammation and damage of the ganglia. I do think there has to be 'some' means of regeneration of cells for me to experience even mild improvement.

As for your ANA being negative: My ANA, as well as SSA & SSB (Sjogren's antibody tests) are ALL negative and have been for 19 years. I am sero-negative for sjogren's...as are up to 40% of Sjogren's patients! Although my lip biopsy was clearly positive showing complete destruction of the acinar structures and replaced with scar tissue. The degree of damage and fibrosis was listed as typical of Sjogren's at end stage. So, that being said, don't discount the Sjogren's until you've had a lip biopsy and other antibody testing. And make sure your lip biopsy is read by a qualified pathologist with experience in Sjogren's Dx...and make sure they use a proper scale, like Greenspan.

Is it possible for you to travel to Hopkins? They have an excellent Sjogren's Center and of course I mentioned earlier about my neuro/rheumy who specializes in neuro manifestation of rheumatic disease (specifically focused on sjogren's). His name is Julius Birnbaum and you can find many of his articles, bio, etc online. If possible, it would be well worth your effort to try and see him.

And one more note: Dry eyes often water more frequently than normal eyes...due to inflammation. You should have your eyes checked by an ophthalmologist and a few tests done (schirmer's, Rose bengal, slit lamp etc). You may have more damage to your eyes than your realize. Just a thought.
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"Thanks for this!" says:
DavidHC (12-20-2015)