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Originally Posted by glenntaj;161513
It may really be very difficult to tell any of this, though, without proper testing, and from what you've written, that may be very hard to do in your part of the world. The improvement with IVIg does point to some form of autoimmune process--and many people have been prescribed it "off-label" for unusual neuropathy presentations and have benefitted--but as to what is really going on, that may take a nerve or skin/punch biopsy, and probably many more tests than you've had. (Have you seen the test spreadsheets at [url
www.lizajane.org[/url], by the way? It would really be useful to get a lot of autoantibody testing, as these, if they are found, have strong prognostic implications.)
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Have you got any links to the "off-label" use of ivig for neuropathy? I would like to bring this up with my neurology dept next time I see them as I would like to try and persuade them to put me ivig to see if it helps at all and any paperwork I could produce may help....