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Old 10-07-2016, 12:19 PM
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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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1) I sort of doubt you can assume these symptoms are Raynaud's. The color changes you mention are to white powdery/shiny...not the typical blue and red changes. And Raynaud's wouldn't explain the facial SFN symptoms.

2) Absolutely! If this hasn't been explored, then by all means, you should see an ENT.

3) Of course it could...to some extent. I quick steroid pulse would tell you whether inflammation is the culprit. Symptoms would greatly reduce in a matter of 2-3 days with the steroids. But again, this doesn't explain the facial symptoms. Only full body SFN would seem to explain the wide spread symptoms you have.

4) YES!! You know how I feel about this...I've been singing this tune for a while...LOL But it would be nice to see what Glenn thinks or others , as well.

5) Yes, even some eye/vision symptoms are a result of dysautonomia. I have frequent spells of double vision from autonomic dysfunction.

6) IVIG would be best bet to slow progression and reduce symptoms for long term gains. Sjogren's mediated neuropathy can cause extensive damage in a short period of time and should be treated immediately for best results. Dr. Birnbaum told me that aggressive treatment AFTER the first year shows less positive results. The other med that may be helpful is Cellcept. Steroids may also be an option...a pulse of steroids, to see if this is an inflammatory based neuropathy.

Being this neurologist's first visit and blowing you off, you should focus on the increase/worsening of symptoms and especially the new symptoms. The confirmation of your Sjogren's Dx should open her eyes have her start singing a NEW tune. She needs to start treating your overall symptoms aggressively before damage becomes permanent (which was Birnbaum's reasoning for the reduce positive results after the first year).
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"Thanks for this!" says:
echoes long ago (10-07-2016)