Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Michele, Does Nolan have any evidence of neuropathy? Even though IVIG is not an accepted or approved treatment for " standard " neuropathy, I was finally able to get Carl's docs to try it because of the neuropathy - saying that the neuropathy 'could' be caused by an autoimmune problem such as with CIDP. I also gave him the names and numbers of a couple of docs who were using IVIG in patients with mitochondrial disease and bugged him until he called them. His neurologist finally relented after a year (I think just to get me off his back!) and agreed to try one infusion with the understanding that if there was no measurable improvement we wouldn't use it again. Luckily for us there was a significant improvement after the first infusion, but that isn't necessarily typical. Other avenues you might try - does Nolan have a problematic seizure disorder? IVIG is sometimes used to treat difficult epilepsy. Also, has he been tested for any immune deficiencies? That might be another way to get them to use it. I wish I could offer some encouraging news but I doubt you will be able to find a physician who will prescribe it for " mitochondrial disease " unless Nolan were very critically ill and they were out of ideas. Another thing to keep in mind is that even if the doctor did prescribe it - most insurance companies will not pay for IVIG except when used for the " standard " reasons. Good Luck - I wish I could be more helpful. Terri >From: michsull@... >Reply-To: Mitoegroups >To: Mitoegroups >Subject: IVIG >Date: Thu, 25 Jan 2001 14:59:42 EST > >Hi everyone: >I know many of your children receive IVIG for many different reasons. Is >there anyone on this list that gets IVIG for a mito disease and if so, >where >are you located? I attempted try # 3 in Boston to get IVIG based on Complex >III, the inflammatory process, recurrent URI's and a recommendation from >Cohen in Cleveland. Boston docs said they couldn't build a case and without >published findings, it will not fly. >I would like to attempt IVIG for Nolan before we do DCA. Any input is >appreciated. >Thanks. >Michele _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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