Sunfish Posted October 27, 2005 Report Share Posted October 27, 2005 hi all - i found out about a study in the New England Journal of Medicine that i wanted to pass on. obviously this isn't a fix all, but perhaps interesting/promising for some. essentially it's a certain antibody that, if found, has shown - at least in study - that if removed from the blood/plasma - brought drastic improvement in autonomic symptoms. obviously it's only an option IF you have the antibody, but still pretty cool.here's the link to the article summary:http://content.nejm.org/cgi/content/abstract/353/15/1585the doc brought it up & i had the antibody testing for it yesterday...if anything comes of it i'll obviously let you know. ironically enough i had the testing done in baltimore but it was "in transit" to mayo when i went to vandy so they then didn't do it. and then it ended up getting processed incorrectly. so hopefully this time i'll get a valid result. melissa Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 27, 2005 Report Share Posted October 27, 2005 Melissa,Interesting. Sadly enough. Dr. K called for the paraneoplastic antibody panel to be done for me so that I could have that antibody titer to ganglionic achr receptors done (that your article refers to). Mayo ran my blood though but did not do my test correctly. I wound up getting a titer done for achr antibodies - the same one they do to test for myasthenia gravis.I give up. HOW did you get your dr. to do the test properly? Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted October 27, 2005 Report Share Posted October 27, 2005 that is really cool. Thanks for the info. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 27, 2005 Author Report Share Posted October 27, 2005 the same thing happened to me when dr. khurana ordered the test. but the docs at vandy & dr. grubb weren't surprised & said they've had problems too. vandy has figured out how to get it done correctly but didn't do it since we thought i'd had it done & was just waiting for results. the doc at CC (dr. shields) said he hasn't had any problems as long as people get the bloodwork at the clinic & not at an outside lab. so...i'm hoping the third effort for me is a charm, but i feel your frustration. unfortunatly i don't know how to direct getting it done correctly. maybe calling the lab at mayo? or having it done at a hospital lab rather than one of the freestanding labs? i don't know if this would help at all....b/c yep, the same thing happened to me.sorry i don't have any better suggestions hopefully with the research published it will become easier to get the test run (correctly). melissa Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 28, 2005 Report Share Posted October 28, 2005 Thanks for the link--that is now the first treatment listed for the vernino antibodies (antibodies that attack acetylcholine receptors on nerves in the brain)...BTW, the testing wasn't available anywhere except Mayo in the past... I think that's the place to call for info on getting the blood tested.interesting! Nina Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 28, 2005 Author Report Share Posted October 28, 2005 yep, mayo is the only place that does the test.blood can be drawn elsewhere & sent to their lab though, but (as evidenced by some of our unsuccesses above) this is often easier said than done.... melissa Quote Link to comment Share on other sites More sharing options...
ariella Posted October 30, 2005 Report Share Posted October 30, 2005 this is interesting to me... I don't know the connection between the 2 diseases, but I have dysautonomia plus myasthenia gravis (or myasthenia with dysautonomia ) and mestinon is prescribed for both conditions. Now I'm reading that plasma exchange will work for both as well??Many of us here on dinet have muscle fatigue. I'm wondering if there's some connection?Anyway, I found this interestingAriella Quote Link to comment Share on other sites More sharing options...
michiganjan Posted October 30, 2005 Report Share Posted October 30, 2005 How si a plasma exchange done? Quote Link to comment Share on other sites More sharing options...
michiganjan Posted October 31, 2005 Report Share Posted October 31, 2005 Answered my own question.Looked it up.They take the blood from an artery on one side of the body, run it through and extractor that takes out the plasma, then add new plasma to it and put it into a vein on the other side of the body.Kind of like an oil change. Quote Link to comment Share on other sites More sharing options...
wareagle Posted October 31, 2005 Report Share Posted October 31, 2005 Hey guys..this does sound interesting! I couldn't read the article b/c I'm not a registered user..but I had a couple of questions maybe you could answer. Who should have this test done? Is it only indicated for those who have a dx. of an autoimmune issue..or could anyone have this anitbody and just be unaware? I think the testing was mentioned under the "possible causes" section of DINET along with info on Lupus an Guillain-Barre..does that mean that people with this antibody HAVE an autoimmune issue?Sorry if this is confusing!! I was just hoping maybe this was an avenue I could explore with my doc...I'm starting to feel pretty hopeless with my treatment options..just seems like nothing works for me Love to you all-michele Quote Link to comment Share on other sites More sharing options...
Traci Posted November 1, 2005 Report Share Posted November 1, 2005 Ooops I didn't see this topic, before posting the other plasma exchange one.Sorry guys.So plasma exchange musn't be harmful for people with dysautonmias.I don't know about my ganglionic achr receptor anitbodies, but my achr antibodies are high.How interesting. I wonder if this will help me.The doctor today told she's going to try to get it started next week. I'll keep you all informed if it helps.Traci Quote Link to comment Share on other sites More sharing options...
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