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Old 04-20-2014, 08:10 PM
en bloc's Avatar
en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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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Hello and welcome to NeuroTalk.

I too have neurological complications of Sjogren's, in the form of PN as well as severe autonomic neuropathy.

I also receive IVIG, but my dosing is for my immune deficiency, not PN. It is felt that my neuropathy is beyond repair at this stage, as it has damaged the dorsal root ganglia.

The symptoms you describe during your IVIG should be reported to your doctor. The 'twitching' sounds like it might be fasciculations. If you've had this twitching before, then the IVIG likely just created a flare. If you have not had this twitching before, then it may be a sign of a reaction and should be brought to your doctors attention.

http://en.wikipedia.org/wiki/Fasciculation

As for the numbness, I would guess the sudden and short lived improvement was NOT the IVIG. The antibodies from IVIG last for approx 21 days, so it doesn't really make sense for it to only last 2 days. It sounds more like something that would happen from steroids given as a pre-med (to avert reactions). Did you receive steroids right before the infusion? Also, steroids only last a couple days...so this sounds more like what you may have benefited from.

If your neuropathy is inflammatory in nature, then immediate improvement from steroids makes perfect sense...and then it would return to original levels in just a few days. I would make sure to tell your doctor, as it might be helpful in their diagnostics.

How often are you receiving the IVIG? I would give it a few more infusions to see how helpful it is. Also make note of the improvement in numbness (and any other symptoms) on a journal or otherwise to see if it relates more toward the IVIG or steroids (if you receive them---most everyone getting IVIG does).
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