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Old 05-04-2013, 06:20 AM #17
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
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glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default We've had a number of people--

--post about getting Intravenous immunolglobulin (IVIg) over the years for a variety of conditions--if you search with 'IVIg' you'll pull up a whole host of threads (and not just threads involving people with neuropathy, but also people with a large range of suspected autoimmune conditions).

IVIg is very expensive, does not work for everyone, and often comes with side effects of its own. The mechanism by how it works, when it does, is not well understood, though it is thought that it cleans out rogue autoantibodies that are attacking bodily tissue. The effect, though, varies in how long it lasts, so many for whom it works are looking at a long treatment regimen--the infusions have to be repeated at regular intervals as the effects diminish and symptoms return.

Part of the controversy (beyond the expense) is that many insurances won't pay for such treatments without incontrovertible evidence of autoimmunity. this is tricky, particularly in conditions in which the autoantibodies are not the standard anti-nuclear antibody (ANA) variants found in various vascular/connective tissue disorders (i.e., lupus, Bechet's, Sjogren's, polyarteritis nodosa . . .). Many of the autoantibodies to peripheral nerve, for example, have only been discovered/identified over the last two decades and it is thought there may be various others still unidentified and in some cases they may be unique to the individual and his/her tissue types (there's a lot of work going on in this area now with the human genome research), so one really needs a strong medical advocate to push for said treatment.

Some well known research neurologists are strong advocates for this type of treatment when autoimmune mechanisms are suspected (Dr. Norman Latov at the Cornell-Weill Center for Peripheral Neuropathy being a notable example). Still, opinions about its utility vary, even among research neuros at the same facility.

You might want to check out IVIg Living:

http://www.igliving.com/

--as well as the GBS-CIDP foundation (many people with Guillain Barre Syndrome and/or Chronic Inflammatory Demyelinating Polyneuropathy have received IVIg treatments):

http://www.gbs-cidp.org/

--for more information and individual experiences.
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neurontin & lyrica, peripheral neuropathy, portland, small fiber neuropathy

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